marie curie cancer care user survey · a potential sample of patients (a random selection from each...

1. Background and methodology ......................................................................... 1

2. Results ............................................................................................................. 4

2.1 Marie Curie Nursing Service ...................................................................... 5

2.2 Marie Curie Hospice Inpatients .................................................................... 13

2.3 Marie Curie Hospice Day Therapy Outpatient Unit .................................... 20

2.4 Marie Curie Hospice Community Team ..................................................... 27

Conclusion ............................................................................................................ 31

Appendix A: Data Tables ....................................................................................... 32

MarieCurieCancerCareUserSurvey

MarieCurieNursingService, Hospiceinpatient,Hospicedaytherapyandoutpatient,andHospiceCommunity

teamsurveys

Marie Curie Cancer Care User Survey Page 1 of 52

1. Background and methodology Marie Curie Cancer Care’s Strategic Plan for 2011‐2014 states that:

“Patients and families will help us to define quality and develop new and improved services. We will gather their views in greater number; implement changes based on their feedback; and demonstrate that their ‘voice’ makes a difference to others”.

In addition to this, the policy objectives of the devolved administrations; Scotland, Wales, and Northern Ireland place a firm emphasis on understanding the needs of patients, carers, and families. In England, the new, large‐scale reforms to the NHS aim to put the patient first ("no decisions about me without me") and encourage wider use of “patient experience surveys and real time feedback” (Equity and Excellence: Liberating the NHS, 14). Further to this, a more recent recommendation to improve patient safety in the NHS in England states that ‘Patients and their carers should be present, powerful and involved at all levels of healthcare organisations from wards to the boards of Trusts’ (DoH, 2013). In order to move towards addressing these strategic aims, Marie Curie Cancer Care carry out an annual survey of the patients and carers supported. The national user survey aims to gather feedback on the experience of patients and their carers across Marie Curie services. Questionnaires In order to account for different respondents (patients versus carers) and service types (Marie Curie Nursing service (MCNS), Hospice inpatients, Hospice day therapy and outpatients, and Hospice community team), eight separate sets of questions were designed to be administered via an online and paper based survey. The majority of the questions were similar across the surveys although question wording differed according to the target audience, and the surveys for Hospice inpatients and the day therapy and outpatients also included a Hospice specific section. Process Telephone survey MCNS, MC Hospice community team, and MC Hospice day therapy and outpatient service A potential sample of patients (a random selection from each Nursing Service Region or Hospice) was extracted from the Marie Curie Nursing service patient database (Patient Connect) and Hospice databases (PalCare and SystmOne). This sample was selected based on all active patients who met the following criteria: MCNS

the patient had received a visit in the last 14 days or had a request for care open and was not registered as having died or been discharged

the patient had agreed to receive calls from Marie Curie

the patient assessment prognosis was anything other than ‘days’

the patient assessment priority was anything other than ‘urgent’


MC Hospice

the patient had received a visit or had a hospice attendance recorded in the last 4 weeks

A list of the names of patients in the potential sample was then sent to a lead contact in each hospice who sent out letters to patients inviting them to take part in the survey. Letters were also sent to the selected sample in the nursing service inviting them to take part in the survey. Patients were given the option in these letters to ‘opt out’ of the survey. The contact details of these patients and carers were then passed to a group of trained corporate volunteers who, over three evenings contacted as many potential respondents as possible. Responses were entered directly onto an online survey using Snap Survey software. Survey responses were at no point linked to the patient or carer in order to ensure anonymity. Paper‐based Survey MC Hospice Inpatients Over the course of 2 weeks, trained hospice volunteers actively encouraged inpatient participation in the self‐completion inpatient survey (NB. For some hospices this was extended to 4 weeks to allow for a greater response rate). Volunteers visited patients and their carers to explain the survey and assist in completion where needed. The survey was available for all inpatients and their carers to complete during this time period. Sample The tables below show the overall sample of patients and carers who responded to each of the surveys. Table 1.1 – MCCC User Survey 2013 – MCNS – Sample size by regions.

Region MCNS survey

Central 46

Eastern 19

London and South East 16

North East 23

North West 31

Northern Ireland 22

Scotland 27

South West 14

Wales 9

Total 207


Table 1.2 – MCCC User Survey 2013 – MCH Inpatient, day therapy and outpatient, and community team patient – Sample size byhospice.

Hospice MCH Inpatient

survey

MCH outpatient and day therapy patient survey

MCH community team patient survey

Belfast 24 18 ‐

Bradford 19 ‐ ‐

Edinburgh 8 32 2

Glasgow 36 3 11

Hampstead 28 26 ‐

Liverpool 28 40 ‐

Newcastle 18 11 ‐

Penarth 22 14 3

Solihull 49 4 9

Total 232 148 25


2. Results The results section of this report will focus separately on each service type (nursing service, hospice inpatient services, hospice day therapy and outpatient and hospice community team) exploring the demographic profile of the patients and their carers, patient experience and clinical effectiveness, patient and carer engagement, the experience of the hospice (where applicable), and any qualitative feedback gathered. Inevitably some questions were not applicable to all respondents, for example not every patient would be in pain. Equally, a large proportion of respondents were carers of the patients who do not always have insight into all aspects of the patients’ experience. Therefore not all questions could be answered for all patients. In order to account for this missing data, results are displayed as ‘valid percentages’, that is, any missing data (missing, don’t know, not asked or not applicable) will be excluded from the analysis (see appendix A for data tables). Where comparisons are made to other survey results (national bereavement survey and the Help the Hospices patient survey), the same techniques are employed in order to ensure fair comparisons. In order to show the likelihood of variation from the survey sample to the population of Marie Curie patients, results are displayed with 95% confidence intervals. The figure below illustrates what each end of the bars represent, namely that we can be 95% sure that the true result for the population (MC patients) will fall between the two ends of the error bars.

If the bar represents the proportion of the survey sample who rated ‘support’ as very good (75%), we can be 95% confident that between 60% and 90% of the true population (Marie Curie patients) would rate support as very good. Larger error bars suggest that there is more likely to be variance within the population. If we were to show error bars for individual MCNS regions or Hospices, the error bars would be very large due to the small sample sizes. The sample would be too small to judge differences between regions or hospices.


2.1 Marie Curie Nursing Service

38 patients and 169 carers completed the survey on the experience of 207 patients in total. This is compared to 117 in 2012 which is an increase of 77%. Demographics All respondents were asked about the demographics of the patient and the (main) carer, irrespective of who was responding to the survey. Results then are relative to all respondents. The average (mean) age of patients was 76 (ranging from 38 to 99). There was an even proportion of female (51%) and male (49%) patients, nearly all patients (95%) were White, just 2% were Black or Black British, 2% were Asian or Asian British, 1% had a mixed ethnic background and 1%were another ethnicity. Under two thirds (61%) of patients had a primary diagnosis of cancer, and over a third (39%) had a primary diagnosis of a life limiting illness other than cancer.

The chart above shows that the profile of the patients in the survey sample largely reflects the patients supported by the Marie Curie Nursing service overall in terms of gender and ethnicity. There is a marked difference in the proportion of patients surveyed who had a life limiting illness other than cancer compared to the Nursing Service overall. The average (mean) age of the carers was 63 (ranging from 16 to 91). Over two‐thirds of carers were female (69%) and approximately one third were male (31%). The carer lived with the patient in the majority (73%) of cases, elsewhere in 21% of cases and in 6%, the patient had no carer. Patients often received support from more than one carer, 50% of respondents reported that the patient was cared for by a partner or spouse, 39% reported that a son or daughter provided support, 3% a parent, 4% a sibling, 6% another family member, 4% a friend and 4% another (God son, great grandson, Marie Curie Nurse, Support Worker).

Male Female White Other Cancer Non‐cancer

Gender Ethnicity Diagnosis

Survey 49% 51% 95% 5% 61% 39%

MCNS 51% 49% 98% 2% 77% 23%

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MCCC User Survey 2013 ‐MCNS ‐ Demographics of patients in survey and in MCNS overall


Patient experience and clinical effectiveness “People approaching the end of life have their physical and specific psychological needs safely, effectively and appropriately met at any time of day or night, including access to medicines and equipment.”

NICE Quality Standards for end of life care for adults, 2011 Respondents were asked to rate their experience of the support they had received on a 5 point scale (very good, good, fair, poor, very poor). As in previous years, the overwhelming majority of respondents rated their overall experience of the Marie Curie Nursing Service as a positive one. Last year, 98% of respondents rated their experience of care as positive (good (14%) or very good (84%)). This year, the same proportion of respondents (98%) rated their overall experience of the Marie Curie Nursing Service as positive (good (12%) or very good (87%)). Ratings from the national bereavement survey (Voices 20121) were less positive: just 82% of bereaved carers rated the overall care from community nursing as positive. Further analysis revealed no significant differences in overall rating of the Marie Curie Nursing service by demographic characteristics (diagnosis, ethnicity or gender). Respondents were also asked to rate specific aspects of the care that the patient had received.

The chart above shows that the majority of respondents also rated positively (good or very good) the patients’ relief of pain (97%), the patients relief of symptoms other than pain (93%), the patients’ emotional support (96%), and the patients spiritual support (95%). These results show that a similar proportion of respondents rated each aspect of care positively this year to last year (91%, 96%, 93%, 94% respectively). There is however, less

1 National bereavement survey (Voices), 2011. Statistical bulletin, Office for national statistics (http://www.ons.gov.uk/ons/dcp171778_269914.pdf)

98% 97%93%

96% 95%

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Overall Relief of pain Support withother symptoms

Emotionalsupport

Spiritual support

Percentage of responden

ts rating as good or very good

MCCC User Survey 2013 ‐MCNS ‐ Patients and carers reporting a positive experience of care


variance in the findings this year due to an increased sample size. We can therefore be more confident that these results are reflective of our population of patients. Further analysis revealed no significant differences in ratings of the Marie Curie nursing service by ethnicity or gender, however, a significantly larger proportion of non‐cancer patients rated their experience of emotional support more positively than cancer patients2. 78% of non‐cancer patients rated their experience as very good, whereas 62% of cancer patients rated their experience as very good. Table 2.1.1 – MCCC User Survey 2013 – MCNS – Ratings for the experience of emotional support from the MCNS for cancer and non‐cancer patients.

Very good Good Fair Poor Very poor

Cancer (n=93)

62% 30% 6% 1% ‐

Non‐Cancer (n=58)

78% 22% ‐ ‐ ‐

A large proportion of respondents felt that some forms of support were not relevant to them. Levels of non‐response were highest for spiritual support (55%), but were still substantial for pain relief (44%), the relief of other symptoms (40%) and emotional support (24%). The rates of missing data (where responses were not applicable or the respondent could not answer the question) for all types of support except for spiritual, are higher than last year (47%, 40%, 24%, and 15%, respectively), although are similar to figures for the previous year (2011: 42%, 52%, 37%, 18%). Reasons for missing data were largely reported to be due to the patient not requiring or receiving that specific support. These findings are encouraging. The results of the recent national bereavement survey (VOICES, 2012) found that pain relief in the home setting was not rated very positively. Less than half (46%) of the bereaved relatives felt that pain was relieved completely, all or some of the time. The same proportion (46%) stated that pain was only partially relieved for the patient. Although rating on a slightly different scale, ratings for nearly all Marie Curie Nursing service patients for pain relief were positive. Most respondents who had received and read the documents provided by Marie Curie also rated them as good or very good (95%). Patient and carer engagement “People approaching the end of life and their families and carers are communicated with, and offered information, in an accessible and sensitive way in response to their needs and preferences.”

NICE Quality Standards for end of life care for adults, 2011

2 A non‐parametric test (Mann‐Whitney U) showed significant difference between the ratings of experience of emotional support from the Marie Curie Nursing Service based on whether patients had cancer or not (p<0.05).


When asked whether Marie Curie Nurses had up to date information about the patient and whether they treated the patient with dignity and respect, more than 9 out of 10 respondents reported that the nurse had up‐to‐date information about the patient all (75%) or most of the time (18%), and nearly all respondents felt that the patient had been treated with dignity and respect all (95%) or most of the time (3%)3. These results fair well against the recent national bereavement survey which found that 79% of bereaved relatives viewed district and community nurses as treating the patient with dignity and respect all of the time, 48% viewed that hospital nurses treated the patient with dignity and respect all of the time and 81% viewed hospice nurses as treating the patient with dignity and respect all of the time. When reflecting about the level of involvement in decisions about their care, the majority (97%) of respondents stated that they were involved as much as they had liked with decisions around the care the nursing service provide. Of those who did not feel they were involved as much as they would like (n=5), 2 would have liked a bit more involvement and 1 respondent would have liked much more involvement (2 respondents did not give an answer). Most respondents felt that the right amount of support was provided for carers (92%) and the right amount of care was delivered to the patient (83%). Of those who did not feel the carer received as much support as they would like (n=16), 11 respondents would have liked a bit more carer support, 3 respondents would have liked much more carer support, 1 respondent would have likes a bit less carer support and 1 respondent could not answer the question. Of those who did not feel the patient received as much care as they would like (n=33), over three‐quarters (26) of respondents would have liked a bit more patient care, 6 respondents would have liked much more patient care and one could not answer the question.

Qualitativefeedback Respondents were asked for their feedback through two questions at the end of the survey: ‘what else could the Marie Curie Nursing service do to make your life easier?” and “Do you have any further comments about how to improve the Marie Curie Nursing Service, for yourself or for the other people who use it?”. Volunteers were also able to write any other comments about the service made by the respondent in a separate notes section of the survey. The following section of the report highlights the most frequently referenced issues that emerged from the combined feedback across questions. Thematic analysis of the feedback revealed three main themes which mirror the findings from last years’ user survey:

1. Patients and carers feel that Marie curie provides good care:

Respondents (n=111) most frequently noted that they were happy with the care they received, that the standard of care was excellent, and 61 respondents noted that they could not think of any improvements (an additional 26 from the number above (n=137 overall)).

3 2 carers responded to this question with ‘never’ although in the notes both state that the respondent felt that the question was not relevant but did not want to leave it blank.


2. Respondents would like coordination of their care to be improved:

45 respondents cited that they frequently are unaware of when a nurse is turning up until the last minute which often means that plans cannot be made in advance. There were also a few comments regarding last minute cancellations of shifts leaving the carers in difficult situations. Respondents also stated that they would like more flexibility in shift patterns, coordination across services and more consistency in the nurses who come to care for the patient.

3. Respondents would like more care:

44 patients and carers discussed that if it were possible they would like to receive more care from the Marie Curie nurses, some noting the difficulties at night, some saying they would like to be able to get out for a few hours during the day and many noting the positive effect of the nursing alongside their preference for more care.

These themes are explored in more detail below. Marie Curie provides good care Over two thirds of respondents’ (70% overall) commented that nothing more could be done, the nurses do everything they can, no improvements could be suggested, that the care they received was excellent and the nurses ‘outstanding’ and often regarded as being ‘part of the family’.

“No not unless they could get more funding and help more people as they provide an amazing service and i am very grateful for the help and support that i get. All of the nurses have different personalities but are all very nice and i feel relaxed with them”

Carer (North East)

“More than 'very good' the nursing support is 'platinum standard'. There is nothing they can do more. The telephone system is brilliant and diverts quickly to a co‐ordinator who always responds quickly with the right details.”

Carer (Central)

“No ‐ doing an absolutely wonderful job ‐ wonderful people ‐ have become a part of the family.”

Carer (South West) Marie Curie recognise that carers are essential components of an effective palliative care service for communities across the UK, and that the needs of carers themselves are often unmet. It is therefore encouraging that more than one in ten (n=22) respondents mention the positive effect of the nursing on the carer specifically.

“Just them being here 10‐7 so I can get a good nights’ sleep and be ready to look after him the next day is simple wonderful”

Carer (Central)

“No not really. Really grateful for night time help. For years i had to give 24 hour care which was really hard to focus during the day and you get to the end of your tether. Now the carers are in they understand how difficult he can be and just lovely


to have a little break. We live in a one bed flat and I now go and sleep somewhere else.”

Carer (Central)

“They encourage me to go out and meet people and have rest and do a wonderful job. Don't know what I would do without them. I am able to read a book and watch TV. If my husband is too warm or in a wrong position or needs a drink they will take the burden away. I am able to sit outside for a bit to rest. Nothing else they can do. They make tea for my husband. He moves a lot they deal with that. They wash his hands and face and make him comfortable.”

Carer (Scotland) Respondents would like better coordination Although the vast majority of comments were positive, a further common theme that emerged from the qualitative data illustrated that some patients and carers would like more notice of when they will be receiving care and if a visit is cancelled in order to be able to make plans accordingly.

“I have had to get someone to look after my disabled husband and have moved in with my dad for the time being sleeping on the sofa. I don’t want to criticise but when the nurse sitter service called they only gave an hours’ notice and if i had known sooner i could have advised my dad or planned better so that i could have gone home to care for my husband but i want to stress how lovely they are and that i have plenty of support from my family.”

Carer (North East)

“We have an agency who also provide us with women. They do 5 nights a week and if Marie Cure can't turn up they step in. Last Saturday the agency were booked and Marie Curie said they had a nurse coming, but it was a male and she won't have that. So they changed to a woman and I had to stop the agency from coming at 9 o clock. That's not on‐ it's not enough notice, I didn't want the agency girl to lose her day's pay. They should give us the week in advance so we can plan it. A few month ago we got none or one a week, recently we get two but the uncertainty is no good.”

Carer (North West)

“Probably say, if, and this is a practical thing, they came and stayed longer. The night nurse is excellent and that allows us to get a whole nights sleep. Sometimes my mother wakes up in the night and then we have to wake up too, which then means we don't have much energy to help during the day. Having the night nurse really helps us in this respect. The thing is though, we don’t have night nurses all the time and we aren't always aware when we will have a night nurse. As an example, we had a night nurse 10 until 7 for 6 nights and then 4 nights without before getting another one. There doesn’t seem to be any rhyme or reason to this.”

Carer (Scotland)

Some respondents also felt that more consistency in the nurses that visit would be beneficial.

“More continuity of care ‐ we don't know who is coming until 9pm most nights. then we have seen about 30 different nurses who are all good but i don’t know why this


number is not limited to a team of say, 10. Then we could get some continuity, with a smaller team.”

Carer (Northern Ireland)

Respondentswouldlikemorecare Respondents also often mentioned that they would like more care. Nearly one in four patients and carers alluded to their preference for more care or more nurses. In most cases comments were following a statement of praise for the nurses ‐ but some comments clearly show that patients and carers felt that they were not receiving enough care.

“I'd like the nurses to come more often. When they're there I feel completely secure that my husband's being looked after.”

Carer (North West)

“To be available a little more frequently. It would be lovely to have a nurse on a weekly basis but I don’t want to be greedy as I know there are lots of other people who are really poorly who need the service more. But if there was time, that be wonderful.”

Carer (Scotland)

“The odd occasion during the day for respite for the family for a few hours” Carer (Eastern)

“I would like more hours‐ not sure when they are coming next. They only come twice a week and I would prefer 3 days a week. I do rely on them to a certain extent because I can't walk. My son and daughter don't provide any support but I do have support from friends and neighbours.”

Patient (North West)

Othercomments There were also comments around providing more information about what services are available, about particular incidents and about ensuring the nurses have the appropriate skills (for example to administer pain relief).

“We have a book which all the nurses and carers write in every day. They record everything. I've had 9 girls out and they are polite, they are there when you need them, no complaints here. I have a bowel complaint so they see everything and they have seen it all before. They could do with more power‐ I've got morphine here which needs to be administered by a district nurse which they can't do for me. They are very open and above board‐ they won't hide anything.”

Patient (North West)

“At the end of life they really need a qualified nurse that can administer injections/pain relief as a carer turned up last night but was unable to assist in pain relief.”

Carer (northern Ireland)


The themes emerging from this years’ survey mirror those from the last 2 years. However, as many of the themes stem from operational issues, this consistency suggests that these issues either have not yet been solved, or are outside of the control of the MCNS. The table below summarises the results of the thematic analysis of the qualitative responses. Table 2.1.2 – MCCC User Survey 2013 – MCNS – thematic analysis of qualitative feedback from patients and carers.

nothing more

Positive

feed

back

Better

coordination

More care

More clinical

info/ support

More info

services

Other

not use M

C

often

Central 7 29 9 9 1 1 2 4

Eastern 5 10 3 6 0 0 2 0

London & South East 3 10 4 5 1 1 3 1

North East 13 16 4 5 1 2 0 2

North West 7 12 11 9 2 1 2 3

Northern Ireland 8 14 2 3 1 0 1 0

Scotland 9 14 5 5 1 0 1 3

South West 4 3 7 2 1 0 0 0

Wales 5 3 0 0 0 0 0 1

Total comments 61 111 45 44 8 5 11 11

% respondents 31% 57% 23% 23% 4% 3% 6% 6%


2.2MarieCurie HospiceInpatients 169 patients and 63 carers responded to feedback on the experience of 232 patients in total. This is compared to 271 in 2012 which is a decrease of 14%. Whilst it had been hoped that the number of respondents would increase this year, when the number of available beds is taken into consideration (216) this figure may be as many as could be expected. Demographics All respondents were asked about the demographics of the patient and the (main) carer, irrespective of who was responding to the survey. Results then are relative to all respondents. The average (mean) age of the patients was 67 (ranging from 18 to 92), 60% of patients were female and 40% male. 98% of patients were White, 1% were Asian or Asian British and 1% were Black or Black British. The majority (84%) of patients had a primary diagnosis of Cancer, 16% had a primary diagnosis of a life limiting illness other than Cancer.

The chart above shows that the profile of the patients in the survey sample largely reflects the patients supported by the Hospice inpatient service overall, although there was a slightly higher proportion of female patients and non cancer patients in the survey than in the hospices overall. The average (mean) age of the carers was 59 (ranging from 16 to 88). 65% of carers were female, and 35% were male. The carer lived with the patient in 57% of cases, elsewhere in 25% of cases and in 19%, the patient had no carer. Patients often received support from more than one carer, 47% of respondents reported that the patient was cared for by a partner or spouse, 39% reported that a son or daughter provided support, 5% a parent, 10% a sibling, 8% another family member, 14% a friend and 6% another (professional carers, grandchildren and in‐laws).



Survey 40% 60% 98% 2% 84% 16%

MC IP 50% 50% 96% 4% 91% 9%

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MCCC User Survey 2013 ‐ Inpatients ‐ Demographics of patients in survey and in MC Hospice inpatients overall



NICE Quality Standards for end of life care for adults, 2011 Respondents were asked to rate their experience of the support they had received on a 5 point scale (very good, good, fair, poor, very poor). As in previous years, the overwhelming majority of respondents rated their overall experience of the Marie Curie Hospice as a positive one. Last year, 98% of respondents rated their experience of care as positive (good (16%), very good (82%)). This year again, nearly all respondents (99%) rated their experience positively (good (15%) or very good (84%)). Ratings from the national bereavement survey (Voices 2012) were less positive: 91% of bereaved carers rated the overall care from Hospice staff as positive. Further analysis revealed no significant differences in overall rating of the Marie Curie Hospice Inpatient service by demographic characteristic (diagnosis, ethnicity or gender). Respondents were also asked to rate specific aspects of the care that the patient had received.

The chart above shows that the majority of respondents also rated positively the support provided for the patients’ relief of pain (93%), the patients relief of symptoms other than pain (96%), the emotional support provided to the patients (96%), and the spiritual support provided to the patients (94%). These results show that a similar proportion of respondents

99%93%

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Overall Relief of pain Support withother

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MCCC User Survey 2013 ‐ Hospice Inpatients ‐ Patients and carers reporting a positive experience of care


rated each aspect of care positively this year to last year (97%, 97%, 96%, and 94% respectively). Missing data was much lower for inpatients than for other patient groups, possibly due to the different methods of administration used for the inpatient group (paper forms filled out with help from a volunteer, in person) or that there were a higher proportion of patients (who are often better placed to answer questions about their own care) as respondents. Rates of missing data for the relief of pain (13%), the relief of symptoms other than pain (18%), emotional support (13%) and spiritual support (31%) are similar in the main than last year (12%, 17%, 16%, and 37% respectively). Reasons for missing data were largely reported to be due to the patient not requiring or using that specific aspect of support. Further analysis revealed no significant differences in ratings of pain relief, support with symptoms other than pain, emotional support and spiritual support by demographic characteristic (diagnosis, ethnicity or gender). Most respondents who had received and read the documents provided by Marie Curie also rated them as good or very good (94%). Patient and carer engagement “People approaching the end of life and their families and carers are communicated with, and offered information, in an accessible and sensitive way in response to their needs and preferences.”

NICE Quality Standards for end of life care for adults, 2011 When asked whether Marie Curie nurses had up to date information about the patient and whether they treated the patient with dignity and respect, nearly all (97%) respondents reported that the nurse had up‐to‐date information about the patient all (73%) or most of the time (24%), and all respondents felt that the patient had been treated with dignity and respect all (96%) or most of the time (4%). These results fair well against the recent national bereavement survey which found that 81% of bereaved relatives viewed hospice nurses as treating the patient with dignity and respect all of the time. The results are also comparable to the Help for Hospices Patient Survey which found that 96% of inpatients felt they were treated with dignity and respect all of the time. When reflecting about the level of involvement in decisions about their care, nearly all respondents (96%) stated that they were involved as much as they had liked with decisions around the care the hospice inpatient service provide. This is a slight increase from the proportion of respondents last year (89%). Although reflecting on all care received over the last three months, results from the national bereavement survey found that 85% of bereaved relatives stated that the patient was involved in decisions about their care as much as they had wanted. Similarly, on average, 98% of inpatients in the Help for Hospices patient survey were satisfied with their involvement in the planning of their care. Of those Marie Curie Hospice inpatients who felt they were not involved as much as they would like (n=9), 2 respondents would like to be a bit more involved, a further 3 respondents would have liked to have been much more involved, I respondent would like to be a bit less involved and 3 respondents did not state whether they would like to be more or less involved. A large proportion of respondents felt that the right amount of support was provided for carers (96%), this is much higher than proportion of carers in the national bereavement


survey who felt that they had received the right amount of support from all health and social services (51%). Of those who did not feel the carer received as much support as they would like (n=7), 6 of the respondents would have liked a bit more carer support, and 1 respondent would have liked much more carer support.

Hospice Respondents were asked to rate their experience of the different aspects of the Hospice. The chart below shows that the majority of respondents rated positively the welcome they received when they first entered the hospice (97%), the cleanliness of the hospice (100%), the quality of the catering (94%), access to food other than at meal times (93%), and the general environment (98%).

These results were similar to the high ratings from the 2010/11 Help the Hospices day patient survey4. These results suggest an improvement in the catering at the hospices from last year where the proportion of respondents rating positively the quality of the catering and access to food other than at mealtimes was slightly lower (87% and 84% respectively). Qualitative feedback Respondents were asked for their feedback through two questions at the end of the survey: ‘what else could the Marie Curie Hospice inpatient service do to make your life easier?” and “Do you have any further comments about how to improve the Marie Curie Hospice inpatient service, for yourself or for the other people who use it?”. The following section of the report highlights the most frequently referenced issues that emerged from the analysis of the qualitative feedback.

4 Removing missing data from the help the hospices patient survey results, 99% of hospice inpatients rated the cleanliness in the hospice positively, 99% rated the general environment positively, 94% rated the quality of the food positively and 96% rated positively the access to food other than at mealtimes.

97% 100% 98%94% 93%

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MCCC user survey 2013 ‐ Hospice inpatients ‐ Patients and carers reporting a positive experience of the Hospice


Thematic analysis of the feedback revealed two main themes:

1. Marie curie provides good care:

The most common theme that emerged (81% of respondents who commented) was that the patient could not think of any improvements, that the care they had received had been very good, that the staff were excellent, or that the hospice could not do any more than they currently do.

2. Improved facilities and catering

Around one quarter (27%) of respondents commented on the hospice facilities, environment or the food and drink options.

Marie curie provides good care The most common theme to emerge from the qualitative feedback was that the patient and carers could not think of any improvements and that the Hospices provide excellent care.

“I cannot think of anything. This hospice is such a wonderful place. My daughter cried with happiness when she came to the hospice to look around, she knew this was the hospice for me to come to, everyone is so kind.”

Patient (Bradford)

“Nothing could improve the quality of care for patients or carers than that which is practised here. Count ourselves so fortunate to have been able to have this for my wife.”

Carer (Newcastle)

“Cannot fault, supported throughout all of my husband's stay, facilitated all his and our family wishes. Open visiting times made it easier and stopping together as a family made our lives so much easier. Staff and volunteers outstanding.”

Carer (Solihull) Nearly one in 5 respondents also mentioned how supportive, flexible and dedicated the staff at the hospice had been.

“Support from staff in helping to walk outside no‐one says "come on you back to the ward" "come on you have to get up"”

Patient (Liverpool)

“They already do everything they can so you cannot improve on excellence. There is not one member of staff who will not do everything within their power to attend to your wishes. They exceed all expectations and go the extra mile.”

Patient (Solihull)

“Couldn't get any better. Except let me make a cuppa myself instead of bothering the staff who are busy doing other things, overworked, underpaid, and still have time to put in 20 mins with a patient when they sit and rub your hair to calm you down, that's all stuff you don't get paid for, they are quite amazing people”

Patient (Edinburgh)


Improved facilities and catering Around a quarter of respondents had some suggestions for how to improve the lives of people staying at the Hospice. For the most part, these comments referred to catering, the general environment and facilities for patients and carers. For example, respondents felt that there should be more catering options available for visitors.

“As I have stopped over a week with my husband and boys I found it was expensive, relying on visitors to bring food in, unable to refrigerate food. If donations could be used to provide fridge, microwave, cutlery and crockery for relatives use, as relatives sometimes cannot or don't leave their loved ones. There is ample space at tea/coffee sections like the staff area in restaurant.”

Carer (Solihull)

“A small coffee shop for sandwiches etc. Vending machine food too cold. Would be nice to have a place to sit and eat away from bedside.”

Carer (Liverpool) Respondents also noted some problems with the general environment and made suggestions for more facilities to be available for patients and carers.

“The only problem is the noise at night.” Patient (Liverpool)

“More toilets for visitors ‐ none in restaurant or close by as there is a echo of emptiness in the foyer & leading off to the rooms ‐ perhaps some background music or even hospice radio some time in the future perhaps!”

Carer (Solihull) “A laundry service perhaps? Especially for people who live far away.”

Carer (Belfast)

“Availability of daily newspaper a METRO. Small fridge for rooms. Velcro fixture for remote control/buzzer to keep in place. Buzzer could be cordless ‐ not suitable for left‐handed patients or left sided sleep. Cord is draped over body, Velcro would help”

Patient (Glasgow) A number of respondents asked for more support or more information about the services that Marie Curie offer or about a particular problem related to the patients’ condition.

“More information provided regarding the specific illness that the person I care for out is suffering from. And more structured advice on how to manage the condition better on a daily basis.”

Carer (Solihull) “Provide slightly more info on what exactly they can provide”

Patient (Solihull)

“Get rid of the pain!! You are trying but not yet successful. Needs info in form other than written.”

Patient (Liverpool)


Other Comments Few comments were made that did not fit into any of the categories above, some of these included the respondent stating it was too early to comment on changes, there was a comment regarding visiting times and there were a couple of comments about the Hospice being short staffed. The table below summarises the results of the thematic analysis of the qualitative responses. Table 2.2.1 – MCCC User Survey 2013 – MC Hospice inpatient service – Thematic analysis of qualitative feedback from patients and carers.

Total number

commen

ts

Positive

feed

back

No im

provements'

Positive commen

t

regarding staff

Gen

eral Positive

commen

t

Support/care

positive

Suggested

improvemen

ts

Improvemen

t in

facilities

more in

support/care/info

Improvements to

Catering

Environmen

tal

improvemen

ts

Other

Too early

Belfast 13 11 8 1 5 ‐ 4 3 ‐ 1 ‐ 1 ‐

Bradford 16 15 9 10 10 1 4 4 ‐ ‐ ‐ 2 ‐

Edinburgh 7 6 5 1 2 ‐ 1 ‐ 1 ‐ ‐ ‐

Glasgow 31 28 20 4 15 2 7 2 3 2 1 ‐ ‐

Hampstead 14 9 3 1 6 1 7 2 3 2 1 ‐ 1

Liverpool 20 11 6 1 7 1 12 2 5 6 4 1 ‐

Newcastle 16 14 13 2 7 2 1 ‐ ‐ 1 ‐ 1 1

Penarth 18 15 8 3 8 1 2 2 ‐ ‐ ‐ 1 1

Solihull 33 27 21 6 12 1 8 2 5 1 2 1 1

Total 168 136 93 29 72 9 46 17 17 13 8 7 4

% respondents 81% 55% 17% 43% 5% 27% 10% 10% 8% 5% 4% 2%


2.3Marie CurieHospice DayTherapyOutpatientUnit

114 patients and 31 carers responded to feedback on the experience of 148 patients in total. This is compared to 95 in 2012 which is an increase of 56%. Demographics All respondents were asked about the demographics of the patient and the (main) carer, irrespective of who was responding to the survey. Results then are relative to all respondents. The average (mean) age of the Hospice Day Therapy and Outpatient patients was 65 (ranging from 36 to 84). 62% of patients were female and 38% male. Nearly all (93%) patients were White, 4% of patients were Asian or Asian British, 2% were Black or Black British, 1 patient was Chinese and 1 patient stated other ethnic group. The majority (75%) of patients had a primary diagnosis of Cancer, but 1 in 4 (25%) had a primary diagnosis of a life limiting illness other than Cancer.

The chart above shows that the profile of the patients in the survey sample largely reflects the patients supported by the Hospice day therapy and outpatient service overall. The average (mean) age of the carers was 64 (ranging from 21 to 80). 59%% of carers were female, and 41% were male. The carer lived with the patient in 57% of cases, elsewhere in 14% of cases and in 29%, the patient had no carer. Patients often received support from more than one carer, 62% of respondents reported that the patient was cared for by a partner or spouse, 44% reported that a son or daughter provided support, 2% a parent, 6% a sibling, 12% another family member, 12% a friend and 10% another (professional carers and in‐laws).



Survey 38% 62% 93% 7% 75% 25%

MC O/DTP 35% 65% 95% 5% 78% 22%

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

MCCC User Survey 2013 ‐ Hospice day therapy and outpatients ‐Demographics of patients in survey and in day therapy and outpatient

units overall



NICE Quality Standards for end of life care for adults, 2011 Respondents were asked to rate their experience of the support they had received on a 5 point scale (very good, good, fair, poor, very poor). As in previous years, the overwhelming majority of respondents rated their overall experience of the Marie Curie Hospice as a positive one. Last year, 99% of respondents rated their experience of care as positive (good (10%), very good (89%)). This year the same proportion of respondents (99%) rated their experience positively (good (7%) or very good (92%)). Ratings from the national bereavement survey (Voices 2012) were less positive: 91% of bereaved carers rated the overall care from Hospice staff as positive. Further analysis revealed no significant differences in overall rating of the Marie Curie Hospice Day Therapy and Outpatient service by demographic characteristic (diagnosis, ethnicity or gender). Respondents were asked to rate specific aspects of the care that the patient had received.

The chart above shows that the majority of respondents also rated positively the support provided for the patients’ relief of pain (96%), the patients relief of symptoms other than pain (93%), the emotional support provided to the patients (97%), and the spiritual support provided to the patients (96%).

99%96%

93%97% 96%

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%


symptoms

Emotionalsupport

Spiritualsupport



MCCC User Survey 2013 ‐ Hospice day therapy and out‐patients ‐Patients and carers reporting a positive experience of care


The larger error bars for the proportion of patients who rated support with symptoms other than pain positively is caused by the high proportion of missing data for this question (45% of respondents did not provide an answer). This decreases the sample size for the question, and as a consequence increases the level of uncertainty about where the true rating for all MC Hospice day therapy and outpatient patients lies. The proportion of missing data for this question is much higher than last year (26%). Missing data was much lower for the relief of pain (26%) and emotional support (20%) and slightly lower for spiritual support (37%). These rates of missing data (where responses were not applicable or the respondent could not answer the question) are similar in the main than last year (19%, 17%, 32%, respectively).Reasons for missing data were largely reported to be due to the patient not requiring or using that specific aspect of support. Further analysis revealed no significant differences in ratings of pain relief, support with symptoms other than pain, emotional support and spiritual support by demographic characteristic (diagnosis, ethnicity or gender). All respondents who had received and read the documents provided by Marie Curie also rated them as good or very good. Patient and carer engagement “People approaching the end of life and their families and carers are communicated with, and offered information, in an accessible and sensitive way in response to their needs and preferences.”

NICE Quality Standards for end of life care for adults, 2011 When asked whether Marie Curie nurses had up to date information about the patient and whether they treated the patient with dignity and respect, nearly all (98%) respondents reported that the nurse had up‐to‐date information about the patient all (74%) or most of the time (23%), and all respondents felt that the patient had been treated with dignity and respect all (98%) or most of the time (2%). These results fair well against the recent national bereavement survey which found that 81% of bereaved relatives viewed hospice nurses as treating the patient with dignity and respect all of the time. When reflecting about the level of involvement in decisions about their care, nearly all respondents (96%) stated that they were involved as much as they had liked with decisions around the care the hospice day therapy and outpatient service provide. Although reflecting on all care received over the last three months, results from the national bereavement survey found that just 85% of bereaved relatives stated that the patient was involved in decisions about their care as much as they had wanted. Of those who felt they were not involved as much as they would like (n=6), 2 respondents would like to be a bit more involved and 1 respondent would have liked to have been much more involved (3 respondent did not state whether they would like to be more or less involved). A large proportion of respondents felt that the right amount of support was provided for carers (92%), this is much higher than the proportion of carers in the national bereavement survey who felt that they had received the right amount of support from health and social services (50%). Of those who did not feel the carer received as much support as they would like (n=8), 4 respondents would have liked a bit more carer support and 4 respondents did not state whether they would like more or less carer support.


Hospice environment Respondents were asked to rate their experience of the different aspects of the Hospice. The chart below shows that the majority of respondents rated positively the welcome they received when they first entered the hospice (97%), the cleanliness of the hospice (99%), the quality of the catering (88%), access to food outside of meal times (89%) and the general environment (96%).

The larger error bars for the proportion of patients who rated the quality of the catering and access to food outside of meal times as good or very good is a result of missing data for this question (44% and 50% respectively). This high level of missing data increases the level of uncertainty in the true rating for the hospice day therapy and outpatients. These findings similar to the ratings from the 2010/11 Help the Hospices day patient survey5. Missing data for the questions relating to catering is largely due to patients not eating at the hospice. Qualitativefeedback Respondents were asked for their feedback through two questions at the end of the survey: ‘what else could the Marie Curie Hospice day therapy and outpatient service do to make your life easier?” and “Do you have any further comments about how to improve the Marie Curie Hospice day therapy and outpatient service, for yourself or for the other people who use it?”. The following section of the report highlights the most frequently referenced issues that emerged from the analysis of the qualitative feedback.

5 Removing missing data to compare to this report, findings from the Help the Hospice patient survey show that 100% of hospice day patients rated the cleanliness in the hospice positively, 98% rated the general environment positively, and 96% rated the quality of the food positively.

97% 99% 96%88% 89%

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Welcome Cleanliness Generalenvironment

Catering Access to food

MCCC user survey 2013 ‐ Hospice day therapy and out‐patients ‐Patients and carers reporting a positive experience of the

Hospice


Thematic analysis of the feedback revealed two main themes:

1. Marie curie provides good care:

74% of respondents who commented, noted that the care they received was very good, they were satisfied with the service or they could not think of any possible improvements to the service.

2. Ideas for improving facilities and processes:

14% of respondents who commented, noted possible improvements could be made to some of the hospice facilities or processes such as booking appointments.

Marie Curie provide good care Three quarters of the respondents’ comments noted that nothing could improve the support they received. Patients and carers made particular mention that the hospice staff provided excellent care, and the environment of the hospice was relaxing.

“They have been exceptionally helpful, giving advice on additional benefits, helping filling out forms. Good to talk to, one on one and they really listen and help.”

Patient (Day therapy, Solihull)

“The staff are absolutely fantastic. They do everything we need them to do. It is an exceptional hospice ‐ I was at a hospice somewhere else in North London, and although that was very good this one in Hampstead is so good. There's nothing more I could ask of the staff, it's a wonderful place. If you're going to die somewhere it's the best place to die.”

Patient (Day therapy, Hampstead)

“Everyone there is lovely ‐ even the laundry people! Always greeted with hellos and smiles from anyone that works there. I feel really comfortable there and I have a great relationship with my nurse, who has treated me since I was first referred.”

Patient (Outpatient, Liverpool)

“No I think they're really doing all they can. He goes there and really loves it, the gardens are lovely and he looks out onto something pleasant.”

Carer (outpatient, Newcastle) Some patients also made reference to how the support from the hospice has helped them personally.

“They instinctively know how to handle people...My wig used to be a security blanket and they convinced me to take it off by Christmas ‐ that's a really small thing but it's a really big impact. I poo‐pooed a hospice from the beginning but it's been a very very positive thing for me ‐ I'm very lucky to have them.”

Patient (Day therapy, Newcastle)

“The great think about going there is that I feel normal again .... other people don't know what to say to people who have cancer, but there it's just normal”

Patient (Day therapy, Edinburgh)


Improving facilities and provide equipment The other common theme to emerge from the feedback related to improving the facilities at the hospice and some of the processes. Respondents discussed waiting times for support or treatments, that the hospice needs more staff, and the facilities such as having somewhere indoors to smoke or having access to Wi‐Fi and the shortage of parking. Some also mentioned the difficulty in getting to some Hospices.

“Sometimes the waiting time for appointments can be half an hour but that's something you have to expect; somebody brings me tea and biscuits.”

Patient (Outpatient, Hampstead)

“No improvements about care ‐ No bus stop outside the hospice and husband finds it difficult to walk to the hospice from bus stop”

Carer (Outpatient, Glasgow)

“Long walk from tube, perhaps a shuttle or minibus” Patient (Outpatient, Hampstead)

“Car parking at the hospice ‐ few disabled parking spots (2) and these had not been re‐painted recently so non‐disabled users were using them which was inconvenient for patient at times.”

Patient (outpatient, Liverpool) Other comments

A number of respondents also requested that they or the carer received more care or

treatments

“Would like more support from the family as they are going through it to.”

Carer (Outpatient, Belfast)

“As an inpatient the bathing situation is great. So to be able to access a bath as an

outpatient would be excellent...Hydrotherapy or other types of water therapy would

be really helpful. Also possibly some other complimentary therapies ‐ reflexology,

acupuncture.”

Patient (Day therapy, Liverpool)

The table overleaf summarises the results of the thematic analysis of the qualitative responses.


Table 2.3 – MCCC User Survey 2013 – MC Hospice day therapy and outpatient service – Thematic analysis of qualitative feedback from patients and carers.

Marie Curie Hospice Name

Number

commen

ts

All positive

More Care

(any)

Suggested

improveme

nts

Other

too

early/dk

Belfast 18 14 1 1 2 0

Edinburgh 32 23 4 2 1 3

Glasgow 3 2 0 1 0 0

Hampstead 26 19 1 7 3 2

Liverpool 40 29 3 7 4 1

Newcastle 11 8 1 0 1 0

Penarth 14 11 2 2 1 0

Solihull 4 3 0 1 0 0

Total 148 109 12 21 12 6

% respondents 74% 8% 14% 8% 4%


2.4Marie CurieHospice Community Team

8 patients and 17 carers responded to feedback on the experience of 25 Hospice Community Team patients in total. This is a disappointing decrease of 32% on last year (37). This is partly due to there not being as many corporate volunteers available as hoped. However the biggest issue was inaccurate data (incorrect/incomplete phone numbers, some patients had died some time ago etc.) being passed to the volunteers which caused significant delays. Demographics All respondents were asked about the demographics of the patient and the (main) carer, irrespective of who was responding to the survey. Results then are relative to all respondents. The average (mean) age of patients was 72 (ranging from 46 to 86), over three‐quarters (78%) of the patients were female, and one in five (22%) were male. All patients with a recorded ethnicity were White. The majority (88%) of patients had a primary diagnosis of Cancer, and just one in ten (12%, n=3) had a primary diagnosis of a life limiting illness other than Cancer.

The chart above shows that the profile of the patients in the survey sample largely reflects the patients supported by the Hospice community teams overall in terms of ethnicity and diagnosis, however a larger proportion of female patients are represented in the survey sample. This is undoubtably due to the small number of respondents for this survey, just 17 respondents reported the gender of the patient. The average (mean) age of the carers was 64 (ranging from 20 to 84). Three quarters (76%) of carers were female and one quarter (24%) were male. The main carer lived with the patient in 58% of cases, 29% of carers lived elsewhere, and 13% of patients had no carer. Patients often received support from more than one carer, 57% of respondents reported

Male Female White Other CancerNon‐cancer


Survey 22% 78% 96% 4% 88% 13%

MC Community 50% 50% 99% 1% 88% 12%

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

MCCC User Survey 2013 ‐ Hospice community patients ‐ Demographics of patients in survey and supported by the Hospice community teams

overall


that the patient was cared for by a partner or spouse, 38% reported that a son or daughter provided support, 5% another family member, 5% a friend and 5% another (the Church). Patient experience and clinical effectiveness “People approaching the end of life have their physical and specific psychological needs safely, effectively and appropriately met at any time of day or night, including access to medicines and equipment.”

NICE Quality Standards for end of life care for adults, 2011 Respondents were asked to rate their experience of the support they had received on a 5 point scale (very good, good, fair, poor, very poor). As in previous years, the overwhelming majority of respondents rated their overall experience of the Marie Curie Hospice Community team as a positive one. Last year, all respondents (100%) rated their experience positively (good (10%) or very good (90%)). This year again, all respondents rated their experience positively (good (29%) or very good (71%)). Respondents were also asked to rate specific aspects of the care that the patient had received.

The chart above shows that the all respondents also rated positively the support provided for the patients’ relief of pain (100%), and the majority of respondents rated positively the patients relief of symptoms other than pain (88%), the emotional support provided to the patients (96%), and the spiritual support provided to the patients (87%). Ratings for the patients’ relief of symptoms other than pain and the spiritual support provided to the patients were lower this year than last (93% and 96% respectively), although this is likely to be a result of the small sample size: just a couple of patients can make a large proportional difference with a small sample size.

100% 100%

88%

96%

87%

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%


symptoms

Emotionalsupport

SpiritualsupportP

ercentage of responden


MCCC User Survey 2013 ‐ Hospice community team patients ‐Patients and carers reporting a positive experience of care


The larger error bars for the proportion of patients who rated the relief of symptoms other than pain and spiritual support positively is caused by the high proportion of missing data for these question (28% and 40% of respondents respectively, did not provide an answer). This decreases the already small sample size for the question, and as a consequence increases the level of uncertainty about where the true rating for all MC Hospice Community patients lies. Missing data was much lower for emotional support (8%) and was high for pain relief (36%), but as all respondents who answered the question did so positively, there is no variance of the valid per cent of positive responses. The rates of missing data (where responses were not applicable or the respondent could not answer the question) for all types of support are similar to last year (22%,38%, 16%, and 30% respectively). Reasons for missing data were largely reported to be due to the patient not requiring that specific support. Most respondents who had received and read the documents provided by Marie Curie also rated them as good or very good (94%). Patient and carer engagement “People approaching the end of life and their families and carers are communicated with, and offered information, in an accessible and sensitive way in response to their needs and preferences.”

NICE Quality Standards for end of life care for adults, 2011 When asked whether Marie Curie nurses had up to date information about the patient and whether they treated the patient with dignity and respect, nearly all respondents reported that the nurse had up‐to‐date information about the patient all (70%) or most of the time (26%), and all respondents felt that the patient had been treated with dignity and respect all (96%) or most of the time (4%). These results fair well against the recent national bereavement survey which found that 81% of bereaved relatives viewed hospice nurses as treating the patient with dignity and respect all of the time. When reflecting about the level of involvement in decisions about their care, all respondents stated that they were involved as much as they had liked with decisions around the care the hospice community team provide. Although reflecting on all care received over the last three months, results from the national bereavement survey found that just 85% of bereaved relatives stated that the patient was involved in decisions about their care as much as they had wanted. All but one respondent felt that the right amount of support was provided for carers (95%), this is much higher than the proportion of carers in the national bereavement survey who felt that they had received the right amount of support from health and social services (50%). All respondents also believed that the right amount of care was delivered to the patient. The respondent who did not feel the carer received as much support as they would like was unsure as to whether they would like more or less support for the carer. Qualitative feedback Respondents were asked for their feedback through two questions at the end of the survey: ‘what else could the Marie Curie Hospice Community team do to make your life easier?” and “Do you have any further comments about how to improve the Marie Curie Hospice Community team, for yourself or for the other people who use it?”. The following section of


the report highlights the most frequently referenced issues that emerged from the analysis of the qualitative feedback. Thematic analysis of the feedback revealed one main theme: Marie curie provides good care The majority (80%) of respondents comments stated that nothing more could be done or the care they were receiving was ‘excellent’ and the staff were ‘angels’’.

“Lady comes in every two weeks who sits and talks, finds out about circumstances etc makes a lot easier, nice to have someone to talk to”

Carer (Glasgow)

“Very supportive ‐ gives her mum piece of mind” Carer (Glasgow)

“Fantastic. Always a phone call away.”

Carer (Edinburgh)

“No ‐ the support they provide for me and my son, who is now my carer, is excellent” Patient (Penarth)

Other comments There were also a few comments stating that it was too early to comment and a few suggesting increased access to facilities such as transport.

“Help me more. Transport would be very helpful as struggle getting to and from appointments”

Patient (Solihull) The table below summarises the results of the thematic analysis of the qualitative responses. Table 2.2 – MCCC User Survey 2013 – MC Hospice Community team – Thematic analysis of qualitative feedback from patients and carers.

Number of

responden

ts Positive

commen

ts

More

support

More

Equipmen

t

Too early /

dk

More

resource

needed

Other

Edinburgh 2 1 ‐ ‐ ‐ ‐ 1

Glasgow 11 10 ‐ ‐ 1 ‐ ‐

Penarth 3 1 ‐ ‐ ‐ ‐ 2

Solihull 9 8 1 2 1 1 ‐

Total 25 20 1 2 2 1 3

% respondents 80% 4% 8% 8% 4% 12%


Conclusion The core value behind Marie Curie’s strategy is ‘putting patients and families first’. It is clear from the results of this survey that this core value is being realised across the organisation as patients and carers provided positive feedback for all services offered. The National Institute for Health and Clinical Excellence (NICE) Quality standard for end of life care for adults state that: “People approaching the end of life and their families and carers are communicated with, and offered information, in an accessible and sensitive way in response to their needs and preferences.” The results of the survey show that not only do the vast majority of patients and carers feel that patients are treated with dignity and respect all of the time, and are involved in the decisions made about their care, the results fair well when compared to those of the national bereavement survey (VOICES, 2012). This suggests that Marie Curie are successfully tackling the principle of shared decision making with their patients.

Marie Curie VOICES

Patient treated with dignity and respect all of the time

96% 79 ‐ 81%

Patient Involved in decisions as much as they would like

96% 86%

Further to the involvement of patients in their care, the National Institute for Health and Clinical Excellence have also published standards which state that: “People approaching the end of life have their physical and specific psychological needs safely, effectively and appropriately met at any time of day or night, including access to medicines and equipment.” Respondents largely believed that both the patient and carer receive the right amount of support to meet their needs. The results of the analysis show that the services offered by Marie Curie have been well received by patients and their carers across the board with nearly all (99%) respondents rating positively their overall experience of Marie Curie as well as specifically the support they received in relation to the relief of pain, the relief of symptoms other than pain, emotional support and spiritual support. Although patients and carers generally feel that they are receiving the right amount of support from Marie Curie, a small proportion would like to receive more. This is echoed through the thematic analysis of the feedback received. This analysis shows that a small proportion of patients accessing each service would like to receive more care, more notice of when visits will be occurring and when they are cancelled, and more information about Marie Curie services. The majority of qualitative feedback from patients and carers across the services suggests that services are well received, that the nurses ‘are part of the family’, the support ‘is of platinum standard’, resulting in carers who are ‘able to sleep’, and patients who feel ‘at ease’. When taken with the results of previous years, this report suggests consistency in good practice and in the positive experiences for patients and their carers.


Appendix A: Data Tables Marie Curie Nursing Service Data 207 responses (38 patients, 169 carers) How often do the Marie Curie nurses have up‐to‐date information about you in order to care for you effectively?

Number Valid %

Always 150 75%

Most of the time 37 18%

Some of the time 12 6%

Never 2 1%

missing 6 ‐

How often do Marie Curie nurses treat you with dignity and respect?

Number Valid %

Always 193 95%



Never 2 1%

missing 4

Do the Marie Curie nurses involve you as much as you would like them to in decisions about your care?

Number Valid %

Yes 184 97%

No 5 3%

Don't know (not read out) 10 ‐

missing 8 ‐

How much would you like to be involved?

Number

Much less involvement 0

A bit less involvement 0

A bit more involvement 2

Much more involvement 1

Don’t know 2


Does the Marie Curie nursing service provide enough support for the family members and friends who care for you?

Number Valid %

Yes 173 92%

No 16 8%


missing 12 ‐

How much support would you like the Marie Curie nursing service to provide?

Number

Much less support 1

A bit less support 0

A bit more support 11

Much more support 3

Don’t know 1

Do you feel that you receive the right amount of care from the Marie Curie nursing service?

Number Valid %

Yes 163 83%

No 33 17%


missing 6 ‐

How much care would you like to receive?

Number

Much less care 0

A bit less care 0

A bit more care 26

Much more care 6

Missing 1

How would you rate the documents provided in your Marie Curie information booklet?

Number Valid %

Very good 100 71%

Good 34 24%

Fair 7 5%

Poor 0 0%

Very Poor 0 0%

Don't remember (do not read out) 27 ‐

I never received the pack 19 ‐

I received the pack but didn't read it 14 ‐

missing 6 ‐


How would you rate the support provided by the Marie Curie nursing service in each of the following areas: Relief of pain; this could be through medication, massage, complimentary therapy, advice or anything else to relieve pain?

Number Valid %

Very good 66 57%

Good 45 39%

Fair 4 3%

Poor 0 0%

Very Poor 0 0%

Can't answer (not read out) 88 ‐

missing 4 ‐

Relief of symptoms other than pain; This could be help with nausea, constipation, diarrhoea, sores, mouth care, breathlessness or any other symptoms you may have?

Number Valid %

Very good 80 65%

Good 35 28%

Fair 7 6%

Poor 1 1%

Very Poor 1 1%


missing 5 ‐

Emotional support: This might include the opportunity to speak about how you are feeling and about how you or your family are coping with your illness.

Number Valid %

Very good 106 67%

Good 45 28%

Fair 6 4%

Poor 1 1%

Very Poor 0 0%


missing 6 ‐

Spiritual support; by this I am thinking about you as a whole person addressing your wishes, hopes and fears, ideas about your future, your family and your loved ones. If applicable, this includes your religious practices and beliefs have been respected and addressed adequately

Number Valid %

Very good 61 65%

Good 28 30%

Fair 5 5%

Poor 0 0%

Very Poor 0 0%


missing 7 ‐


Thinking about all the areas we have discussed, how would rate your overall experience of the Marie Curie Community Team?

Number Valid %

Very good 162 87%

Good 22 12%

Fair 3 2%

Poor 0 0%

Very Poor 0 0%

missing 20 ‐

Demographics

Patient Carer Age Average (mean) 76 62 Min 38 16 Max 99 91 Sex Female 101 51% 125 69% Male 97 49% 56 31% Ethnicity White British 180 95% Black / Black British 4 2% Asian / Asian British 3 2% Chinese 0 0% Mixed 1 1% Other 2 1% Not stated 5 ‐ missing 12 ‐

Primary diagnosis

Number Valid %

Cancer 118 61%

Non‐cancer 76 39%

missing 13

Carer/ living arrangements

Number Valid %

Main carer lives elsewhere 41 21%

Main carer lives with patient 140 73%

No carer 11 6%

missing 15


Carer's relationship to patient (if applicable)

Number Valid %

Partner or spouse 95 50%

Son or daughter 74 39%

Parent 5 3%

Sibling 7 4%

Other family member 11 6%

Friend/neighbour 7 4%

Other 7 4%

Nursing Area

Number %

Central 46 22%

Eastern 19 9%

London and South East 16 8%

North East 23 11%

North West 31 15%

Northern Ireland 22 11%

Scotland 27 13%

South West 14 7%

Wales 9 4%


Marie Curie Hospice Inpatient service 232 responses (169 patients, 63 carers) How often do the Marie Curie Hospice inpatient service have up‐to‐date information about you in order to care for you effectively?

Number Valid %

Always 148 73%



Never 1 0%

missing 28 ‐

How often do Marie Curie Hospice inpatient service treat you with dignity and respect?

Number Valid %

Always 216 96%



Never 0 0%

missing 6 ‐

Do the Marie Curie Hospice inpatient service involve you as much as you would like them to in decisions about your care?

Number Valid %

Yes 197 96%

No 9 4%


missing 19 ‐

How much would you liked to be involved?

Number




Much more involvement 3Missing 3

Does the Marie Curie Hospice inpatient service provide enough support for the family members and friends who care for you?

Number Valid %

Yes 178 96%

No 7 4%

Don't know 14 ‐

Missing 33 ‐


How much support would you like the Marie Curie Hospice inpatient service to provide?

Number

Much less support 0



Much more support 1

Don't know (not read out) 0


Number Valid %

Very good 69 63%

Good 34 31%

Fair 4 4%

Poor 1 1%

Very Poor 1 1%

Don't remember (do not read out) 6 ‐

Didn’t know about the pack so didn’t read it 74 ‐

I saw the pack but didn't read it 25 ‐

missing 18 ‐

How would you rate the support provided by the Marie Curie Hospice inpatient service in each of the following areas: Relief of pain; this could be through medication, massage, complimentary therapy, advice or anything else to relieve pain?

Number Valid %

Very good 146 73%

Good 41 20%

Fair 11 5%

Poor 2 1%

Very Poor 1 0%

N/A 21 ‐

missing 10 ‐


Number Valid %

Very good 130 69%

Good 51 27%

Fair 6 3%

Poor 2 1%

Very Poor 0 0%

N/A 26 ‐

missing 17 ‐



Number Valid %

Very good 146 72%

Good 48 24%

Fair 6 3%

Poor 1 0%

Very Poor 1 0%

N/A 16 ‐

missing 14 ‐


Number Valid %

Very good 109 68%

Good 42 26%

Fair 9 6%

Poor 1 1%

Very Poor 0 0%

N/A 54 ‐

missing 17 ‐

Thinking about all the areas we have discussed, how would rate your overall experience of the Marie Curie Hospice inpatient service?

Number Valid %

Very good 186 84%

Good 33 15%

Fair 2 1%

Poor 0 0%

Very Poor 1 0%

missing 10 ‐


Demographics


Primary diagnosis

Number Valid %

Cancer 174 84%

Non‐cancer 33 16%

missing 25


Number Valid %



No carer 37 19%

missing 34


Number Valid %



Parent 10 5%

Sibling 20 10%



Other 13 6%


Hospice

Number %

Belfast 24 10%

Bradford 19 8%

Edinburgh 8 3%

Glasgow 36 16%

Hampstead 28 12%

Liverpool 28 12%

Newcastle 18 8%

Penarth 22 9%

Solihull 49 21%

How would you rate the following aspects of the hospice? The way you were welcomed when you first came to the hospice?

Number Valid %

Very good 198 87%

Good 23 10%

Fair 4 2%

Poor 1 0%

Very poor 1 0%

Missing 3

The cleanliness of the hospice?

Number Valid %

Very good 199 86%

Good 31 13%

Fair 1 0%

Poor 0 0%

Very poor 0 0%

Missing 1


The quality of the catering?

Number Valid %

Very good 149 68%

Good 56 26%

Fair 13 6%

Poor 1 0%

Very poor 0 0%

Missing 13

Access to food other than at mealtimes?

Number Valid %

Very good 122 68%

Good 44 25%

Fair 8 4%

Poor 3 2%

Very poor 2 1%

Missing 53

The general environment and surroundings?

Number Valid %

Very good 198 86%

Good 28 12%

Fair 5 2%

Poor 0 0%

Very poor 0 0%

Missing 1


Marie Curie Hospice day therapy and outpatient service 148 responses (114 patients, 34 carers) How often do the Marie Curie Hospice day therapy and outpatient service have up‐to‐date information about you in order to care for you effectively?

Number Valid %

Always 105 74%



Never 1 1%

missing 7 ‐

How often do Marie Curie Hospice day therapy and outpatient service treat you with dignity and respect?

Number Valid %

Always 140 98%


Some of the time 0 ‐

Never 0 ‐

missing 5 ‐

Do the Marie Curie Hospice day therapy and outpatient service involve you as much as you would like them to in decisions about your care?

Number Valid %

Yes 128 96%

No 6 4%


missing 8 ‐

How much would you liked to be involved?

Number




Much more involvement 1Missing 3


Does the Marie Curie Hospice day therapy and outpatient service provide enough support for the family members and friends who care for you?

Number Valid %

Yes 91 92%

No 8 8%


missing 25 ‐

How much support would you like the Marie Curie Hospice day therapy and outpatient service to provide?

Number

Much less support 0



Much more support 0

Don't know (not read out) 4

How would you rate the support provided by the Marie Curie Hospice day therapy and outpatient service in each of the following areas: Relief of pain; this could be through medication, massage, complimentary therapy, advice or anything else to relieve pain?

Number Valid %

Very good 87 80%

Good 18 17%

Fair 4 4%

Poor 0 0%

Very Poor 0 0%


missing 4 ‐


Number Valid %

Very good 56 69%

Good 19 23%

Fair 6 7%

Poor 0 0%

Very Poor 0 0%


missing 7 ‐



Number Valid %

Very good 86 72%

Good 30 25%

Fair 1 1%

Poor 1 1%

Very Poor 1 1%


missing 4 ‐


Number Valid %

Very good 69 74%

Good 20 22%

Fair 2 2%

Poor 0 0%

Very Poor 2 2%


missing 5 ‐

Thinking about all the areas we have discussed, how would rate your overall experience of the Marie Curie Hospice day therapy and outpatient service?

Number Valid %

Very good 129 92%

Good 10 7%

Fair 1 1%

Poor 0 0%

Very Poor 0 0%

missing 8 ‐


Demographics


Primary diagnosis

Number Valid %

Cancer 105 75%

Non‐cancer 35 25%

missing 8


Number Valid %



No carer 41 29%

missing 5


Number Valid %



Parent 3 2%

Sibling 8 6%



Other 12 10%


Hospice

Number %

Belfast 18 12%

Edinburgh 32 22%

Glasgow 3 2%

Hampstead 26 18%

Liverpool 40 27%

Newcastle 11 7%

Penarth 14 9%

Solihull 4 3%

How would you rate the following aspects of the hospice? The way you were welcomed when you first came to the hospice?

Number Valid %

Very good 123 91%

Good 8 6%

Fair 3 2%

Poor 1 1%

Very poor 0 0%

Don’t remember 2

Missing 11

The cleanliness of the hospice?

Number Valid %

Very good 118 90%

Good 12 9%

Fair 1 1%

Poor 0 0%

Very poor 0

Missing 17

The quality of the catering?

Number Valid %

Very good 60 72%

Good 13 16%

Fair 9 11%

Poor 1 1%

Very poor 0 0%

Has not eaten at the hospice (do not read out) 51

missing 14


Access to food other than at mealtimes?

Number Valid %

Very good 41 55%

Good 25 34%

Fair 6 8%

Poor 2 3%

Very poor 0 0%

missing 74

The general environment and surroundings?

Number Valid %

Very good 114 85%

Good 14 10%

Fair 5 4%

Poor 1 1%

Very poor 0 0%

Missing 14


Marie Curie Hospice Community Team 25 responses (8 patients, 17 carers) How often do the Marie Curie Community Team have up‐to‐date information about you in order to care for you effectively?

Number Valid %

Always 64% 70%

Most of the time 24% 26%

Some of the time 4% 4%

Never 0% 0%

Don't know (not read out) 8% ‐

missing 0% ‐

How often do Marie Curie Community Team treat you with dignity and respect?

Number Valid %

Always 22 96%



Never 0 0%


missing 1 ‐

Do the Marie Curie Community Team involve you as much as you would like them to in decisions about your care?

Number Valid %

Yes 23 100%

No 0 0%


missing 0 ‐

Does the Marie Curie Community Team provide enough support for the family members and friends who care for you?

Number Valid %

Yes 18 95%

No 1 5%

missing 6 ‐

How much support would you like the Marie Curie Community Team to provide?

Number

Much less support 0



Much more support 0

Don’t know 1


Do you feel that you receive the right amount of care from the Marie Curie Community Team?

Number Valid %

Yes 24 100%

No 0 0%

missing 1 ‐


Number Valid %

Very good 10 56%

Good 7 39%

Fair 1 6%

Poor 0 0%

Very Poor 0 0%

I never received the pack 5 ‐

I received the pack but didn't read it 2 ‐

How would you rate the support provided by the Marie Curie Community Team in each of the following areas: Relief of pain; this could be through medication, massage, complimentary therapy, advice or anything else to relieve pain?

Number Valid %

Very good 12 75%

Good 4 25%

Fair 0 0%

Poor 0 0%

Very Poor 0 0%


missing 0 ‐


Number Valid %

Very good 10 63%

Good 4 25%

Fair 2 13%

Poor 0 0%

Very Poor 0 0%


missing 0 ‐



Number Valid %

Very good 17 74%

Good 5 22%

Fair 1 4%

Poor 0 0%

Very Poor 0 0%


missing 0 ‐


Number Valid %

Very good 7 47%

Good 6 40%

Fair 2 13%

Poor 0 0%‐

Very Poor 0 0%‐


missing 2 ‐

Thinking about all the areas we have discussed, how would rate your overall experience of the Marie Curie Community Team?

Number Valid %

Very good 17 71%

Good 7 29%

Fair 0 0%

Poor 0 0%

Very Poor 0 0%

missing 1 ‐


Demographics


Primary diagnosis

Number Valid %

Cancer 21 88%

Non‐cancer 3 13%

missing 1


Number Valid %



No carer 3 13%

missing 1


Number Valid %




Friend / neighbour 1 5%

Other 1 5%

Hospice

Number %

Edinburgh 2 8%

Glasgow 11 44%

Penarth 3 12%

Solihull 9 36%

marie curie cancer care user survey · a potential sample of patients (a random selection from each...

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