greater manchester neuro-rehabilitation operational ... · gm neuro-rehabilitation services event:...

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Setting the Standards for Greater Manchester Neuro-Rehabilitation

Services

8th September 2016

A record of the event

Greater Manchester Neuro-Rehabilitation Operational Delivery Network

GM Neuro-Rehabilitation Services Event: 8th

September 2016

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Welcome

Rebecca Patel, patient and community engagement manager from the GM Service

Transformation Unit1 opened the evening by explaining the purpose of the event: to discuss the

GM neuro-rehabilitation service2 and part of the ongoing engagement and exchanges between

the service and people who use the service.

Rebecca explained:

we have listened to what people said was wrong with the service during events in

March 2016, as well as ongoing feedback and have considered how the service could

change to meet people’s needs

we want to share those proposals with you to check we are on the right track

we would like you to help us set the standards for the service – what you and other

people that use the service, expect from the service – you are the experts, we value

your wealth of experience of the service

the event will begin with an overview of what the service is like now, followed by

our proposals for the inpatient and community neuro-rehabilitation services. After

that we will break-out into small groups to find out what you think of the proposals

and hear from you about what the standards of the service should be

1 Further details about the GM Service Transformation Unit are available at www.transformationunitgm.nhs.uk

2 Further details about the GM Neuro-Rehabilitation Network are available at www.gmnrodn.org.uk

http://www.transformationunitgm.nhs.uk/

http://www.gmnrodn.org.uk/


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The Service Now and the Problems: Dr Fayez Morcos, Clinical Lead for the GM

Neuro-Rehabilitation Network

Slide 1:

Dr Morcos re-iterated the purpose of the event

Dr Morcos provide examples of events that mean

people may need to access neuro-rehabilitation

services, for example a brain injury from an

accident or a person with a progressive

neurological condition living at home and

deteriorating. People may receive the

rehabilitation in the community from the

community neuro-rehabilitation service or in a

hospital/facility such as those in Greater

Manchester:

- the acute service at Salford Royal Hospital

- one of the four post-acute services at Floyd

Unit (Rochdale), Devonshire Unit

(Stockport), Taylor Unit (leigh infirmary)

and Ward 3 at Trafford General Hospital.


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The map of GM demonstrates where the 5

inpatient services are.

The map of GM shows the areas of GM without a

community neuro-rehabilitation service (those

areas highlighted with a box)

Dr Morcos described how people may move

through the GM neuro-rehabilitation service, as

well as the challenges faced by the current service

– as listed in the slide. One of the key challenges

was identified as ensuring people are in the right

place at the right time in order to receive the right

care.


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Dr Morcos illustrated the patient pathway by

describing two cases. The first, a patient who had a

good experience of the service - a gentleman in his

fifties who received rehabilitation in the Floyd unit,

had a trial period living in the Floyd unit flat with

his wife, prior to going home and accessing timely

rehabilitation from community services.

As national standards for managing patients with a

tracheostomy and/or low awareness have been

developed, we have identified that the post-acute

units are not meeting the standards. The standards

describe the minimum number of patients that a

service should look after in order for staff to

maintain skills, expertise and competencies. The

number of patients with a tracheostomy and/or

low awareness who require the post-acute service

in GM is quite small, which means that we need to

care for this group of patients in one setting to

maintain those skills, expertise and achieve the

standards.

The second case was of a gentleman in his fifties

who had a tracheostomy and low awareness and

due to these two factors mentioned above, he was

not able to access the post-acute services and

instead was transferred to a private unit to

undergo rehabilitation


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Proposal for the inpatient service: Dr Fayez Morcos

Dr Morcos explained that NHS England had

established the GM Neuro-Rehabilitation

Operational Delivery Network (ODN) to address the

challenges described in the next slide.

The work of the ODN is overseen by a Board which

includes senior clinicians and managers from all the

organisations in GM that provide neuro-

rehabilitation, as well as patients, commissioners

and a local authority representative.

Dr Morcos showed this slide to demonstrate how

the ODN working groups report to the Board.


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Dr Morcos gave a brief description of each of the

working groups.

Dr Morcos explained that one of the proposals to

improve the GM neuro-rehab inpatient service was

to have one central waiting list for accessing the

beds and to offer the first available bed to a

patient – even though this may not be their local

service.

Dr Morcos explained that the inpatient service is

not meeting the nationally recommended staffing

levels; impacting the intensity of therapy people

can receive, as well as discharge planning.

Standards are being developed for the information

that is available to patients and families, as a lack

of information currently available has been

highlighted by patients and families.


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The service review group was formed in 2015 to

review the inpatient service and recommend the

most appropriate configuration of the service..

The service review group proposed one service for

patients with prolonged disorder of consciousness

and/or tracheostomy (in the post-acute setting)

and for this service to be at Salford Royal where

the expertise for caring for these groups of

patients. The proposal is create a pathway for

these patients to go to Salford Royal.

The following questions were posed to Dr Morcos:

Q: Will centralising the service make it difficult for families to travel?


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A: Yes, people may have to travel further to visit their loved ones, but we need to centralise the

service in order to meet standards. When we posed the centralisation of the post-acute service

for patients with tracheostomy and/or prolonged disorder of consciousness to patients and

families in March 2016, almost everyone said they would be happy to travel to Salford Royal if it

meant they were receiving the expert care that they would need.

Q: Where do people with challenging behaviour go in your system?

A: First of all, there is a spectrum of challenging behaviour. Severe challenging behaviour is rare

but people with severe challenging behaviour are classed as such if they are hitting people,

persistently trying to leave the service etc.. Like people with tracheostomy, we need to

concentrate people with severe challenging behaviour so that they can access specialists and

specialist services. The proposal would be for people with severe challenging behaviour to

access a specialist rehabilitation service led by neuro-psychiatrists.

Q: Where will that severe challenging behaviour service be? Will it be inpatient?

A: Yes, inpatient. It is currently provided by the independent sector.

Q: I have concerns about the proposed severe challenging behaviour service – that you are

planning to put people in an institute.

A: Perhaps I didn’t explain it very well; Severe Challenging behaviour usually happens at an

early stage after a brain injury and people will likely recover. It is therefore a rehabilitation

service and whilst it would be led by neuro-psychiatry, the team would include neuro-

psychology, other therapists, nurses and neuro-rehabilitation medicine. The proposal was

worked up with a neuro-psychiatrist, several neuro-psychologists in GM, neuro-rehabilitation

consultants, nurses and therapists. I should emphasise that people with severe challenging

behaviours will only be in the facility on a temporary basis, with the team supporting the

person to recover and move on to home or another rehabilitation facility.

Q: Who falls into the slow-progression category?

A: There tend to be three categories of people who need neuro-rehabilitation:

i) Some people improve quite quickly and may then go home with further support from

community neuro-rehabilitation services.

ii) Some people are really impaired and do not progress and need nursing care in a facility

(e.g. a nursing home) or at home.


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iii) Some people continue to improve but that improvement may take a long time,

sometimes 1-2 years to slowly build up function. This group of patients is the ‘slow-

stream’ or ‘slow-progression’ category.

Q: This is a perfect opportunity to push neuro-rehabilitation up the national agenda? Are you

trying to raise the profile of neuro-rehabilitation nationally?

A: We are mainly working with Greater Manchester colleagues, but have links to Northwick

Park hospital in London; links in the North West (Liverpool, Preston, Stoke) and Birmingham;

links with the BSRM and the Royal College of Physicians; links with the GM neurological alliance

and other societies. I agree that we need real involvement and particularly want to listen to

people’s experience of the service.


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Proposal for the community neuro-rehabilitation service: Ashleigh Knowles

Ashleigh explained that the ODN had been tasked with

creating a model and specification for community

neuro-rehabilitation services and the presentation

explains the proposal that community neuro-

rehabilitation clinicians have come up with.

Ashleigh described accessing the service in brief.


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In this and the following slide, Ashleigh described the

principles of the service.

Ashleigh emphasized the need for the service to

commence treatment in timely manner and for

discharge to be timely; to eliminate the post-code

lottery that is evident in the current service; to

understand the impact of disability of people’s life-plan

and to work the patients and families to set goals that

are important to the patient and families.


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Ashleigh described the service operating hours and who

is eligible for the service.

Ashleigh described the rehabilitation process within the

community neuro-rehabilitation service.

The following questions were posed to Ashleigh:

Q: For people with MND, self-referral doesn’t always work as people don’t always know or

recognise when they are deteriorating. For progressive or palliative conditions should people

stay ‘on the books’ (i.e. in the service) and be reviewed?

A: The difficulty for clinicians is that if a person is ‘on the books’ clinicians have a duty of care. It

would need to be up to individual teams whether to keep people on their books or not.

Q: I’m from Bolton and we used to have a service that Ashleigh described, but we no longer

have this. Services that were promised are no longer available and the teams don’t have the

staff that they need.

A: the model being proposed advocates specialist triage so that appropriate people are

accessing the service. Most community neuro-rehabilitation teams have a third of the staff that


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they need – the new specification includes staffing levels which will be proposed to

commissioners.

Q: How do we sell this model to commissioners?

Rebecca Patel enquired whether the audience had heard of Devo-Manc and explained that

Devo-Manc means that it’s up to the people in Manchester to decide what’s best for

Manchester, including specialist services like neuro-rehabilitation.

Deb Troops, Greater Manchester Neurological Alliance, stated that they were worried that

CCGs don’t take brain injury seriously and asked how can the people in the room work together

to get the service described. How do we move neuro-rehabilitation up the agenda?

Rebecca Patel pledged to report what has been said at tonight’s event to the Joint

Commissioning Board for Greater Manchester and explain why neuro-rehabilitation is

important. Rebecca also explained that neuro-rehabilitation has been identified as a priority for

Greater Manchester which involves looking at the standards for the service, patient outcomes

and removing variation across GM.

Deb Troops stated that neuro-rehabilitation needs to stop been seen as a big expense and be

seen as value for money.

Julie Cunningham from North Manchester CCG, explained that N. Manchester CCG is one of the

three areas in GM without a community neuro-rehabilitation team and the CCG is in the

process of doing a case for change to take to the N. Manchester CCG Board, the proposal being

to introduce a community neuro-rehabilitation service in line with the specification that has

been developed.

An audience member from the South Manchester CCG area explained that there is no

community neuro-rehabilitation service in south Manchester and her husband has to go into

hospital to access neuro-physiotherapy. This was emphasised as a health inequality.

Rebecca Patel explained that such health inequality is exactly what Devo-Manc is trying to

address in order to remove any post-code lottery.

Wendy Edge from BASIC asked about the plans for vocational rehabilitation.

Answer from Ashleigh: Vocational rehabilitation is in the specification but we need to iron-out

what is needed for long-term vocational rehabilitation. There is a cohort of patients who need

long-term rehabilitation to help them return to work. Currently, the staffing levels that are

being proposed do not include resource to support long-term vocational rehabilitation.


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Deb Troops stated that the Greater Manchester Neurological Alliance is doing vocational

rehabilitation.

Q: Salford community neuro-rehabilitation team members spend a lot of time travelling and

hence clinical time is being wasted particularly when staff travel out of area to a person who’s

GP is in the Salford catchment. In the future, will people be seen according to resident or GP

postcode?

A: Commissioners will ultimately need to make that decision. Some commissioners are open to

it being patient choice about whether to access the service based on residential or GP

postcode.

Dr Morcos commented that community neuro-rehabilitation services should be local.

Ashleigh stated that she has pulled together some patient stories to share with commissioners.

Ashleigh also explained that the information that community neuro-rehabilitation teams collect

about their service varies considerably across GM and we need to build a culture of collecting

information in community services.

Q: It seems that you are interested in people who are going to get better, but people with

progressive conditions need support to have a quality of life and that support is lacking in GM.

What is happening with the neuro-palliative service?

A: The neuro-palliative service needs to be looked at. The difficulty is that it is being considered

as a general service, rather than specialist. Ashleigh continued, explaining that clinicians are

waiting to find out if commissioners will fund the community neuro-rehabilitation model.

Deb Troops expressed concern about the term ‘best value’. Neuro-rehabilitation isn’t

considered to be best value and it’s not about quality of life, it’s about people’s quality of living.

Other long term conditions don’t have to suffer like people with neurological conditions do. I’m

concerned that commissioners won’t get this model.

Ashleigh explained that commissioners have admitted that they don’t know a lot about neuro-

rehabilitation, but commissioners are keen to understand and thinks that there has been a shift

in understanding and a willingness to address the service.

Dr Morcos explained that we have had good dialogue with commissioners and commissioners

have been involved in developing the community neuro-rehabilitation model.


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Break-out Sessions

The audience broke into groups to consider previous feedback about the service, as well as

questions posed to understand peoples experience and expectations.

Information and Communication

Previous Feedback

When people move between services,

information doesn’t get passed on

Information about voluntary services

should be available on the unit

We want information about the

service, including what the different

professionals do

There should be a welcome pack for

patients which includes a plan for each

patient so we know what to expect, for

example a personalized care plan

Questions to consider

1. How will the service ensure that

feedback from patients improve the

service?

2. What information should be given to

patients and families at the point of

diagnosis?

3. What information should be given to

patients as part of a standard

information pack for discharge?

4. How should patients and carers be

communicated with?

5. How should the service ensure

information is communicated / shared

with the service people are being

transferred to?

6. What advice should be available e.g.

benefits, legal etc.

7. What else can we do to help people

e.g. online cognitive training

programmes, dietary advice etc.


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Feedback from the group

“When people move between services, information doesn’t get passed on”.

This needs to be somebody’s job

Within the service and between services, information needs to be shared

Need to know the process – e.g. a leaflet should be provided

Professionals need some picture and understanding of home situation – person’s goals

Better information transfer between diagnosis

How will the service ensure feedback from the patients improve the service?

Via patient societies and GMNA needs a staff member to be feasible and effective

What information should be given to patients and families at the point of diagnosis?

How to re-access

How to get other help – NHS, Voluntary, private

Self-referral

General Comments

We want to be able to cross boundaries that are set by Devolution - need to be able to

access services across boundaries

Qualitative information – stories not numbers

Accessing the Service

Previous Feedback

People are waiting too long to access

services

Specialist staff need to assess patients

There should be consistent clinical

decisions regarding eligibility to assess

the service

There should be a route back into

community services

Questions to consider

1. What would be an acceptable amount

of time to access inpatient and

community services?

2. Is it a clear pathway / patient journey?

3. Are there are any barriers / problems?

4. Is there anything missing?

5. What about transferring between

neuro-rehab services?

6. How quickly should baseline

assessments be undertaken?


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What would be an acceptable amount of time to access inpatient and community services?

It depends on the situation therefore expert clinician triage is vital

Immediately (on discharge) – no waiting as it could cause a loss of gains and it’s a false

economy

Nobody should be discharged without a rehab plan in place

The rehabilitation in the intermediate units need to be meaningful moving forward

Is it a clear pathway / patient journey?

No – it’s multi-faceted. E.g. Parkinson’s, MS, TBI, Stroke and there is such a lot of variety.

Community model looks good – 3 month review of telephone follow-up

Concern that voluntary sector are being used in place of neuro-professionals – voluntary

sector shouldn’t be a replacement but a compliment

Are there any barriers / problems?

Funding

Culture

Politics

Is there anything missing?

Opticians, pharmacists, dentist, accessible exercise, music therapy, funding for

voluntary sector compliment

Carers health and wellbeing – how do we train / assist them to be part of the workforce

Carers assessments

Adequate facilities

What about transferring between neuro-rehab services?

Patient notes need to travel with the patients – not being reassessed

Other Main Concerns and Issues

People relapse and need more input and not less – no time limits imposed - people

having to stop work to become carers costs the economy

Vocational rehab really needed from stage 1 and 2

Rehabilitation can save money – it needs investment

Model is good

Concerns about funding – services grossly underfunded


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Support / help for carers

Vocational rehabilitation from early on in the patient journey

There is pressure for therapists under:

o Under resourced

o Work at home / additional hours

o Unable to be robust

o Data to challenge = current challenge

Therapists need a network to support

NEEDS LED – may be immediate to 2 weeks and depends on need that needs to be

assessed by an experienced specialist / expert (triage). If patient is deteriorating whilst

working this is unethical.

General Standards

Timely comprehensive triage of need done by understanding what is real to the person

Quality of Service

Previous Feedback

There are large variations in

community services

There should be support for people to

access benefits when they are in

hospital

Health and social care needs to be

more coordinated

There should be support for people

going back to work

Sometimes patients are not being

treated with respect

People are not getting enough therapy

and there’s a lack of consistency in the

therapy (e.g. when staff go on leave,

when bank staff are used)

People can’t access the therapist need

(e.g. neuro-psychologist)

Questions to Consider

1. What is your experience of the

services?

2. What should patients expect from the

service?

3. What should the common standards

be?

4. How do we make sure this service

achieves what it is supposed to?

5. What about benchmarking against

other services?

6. How do we make this service the best

it can be for patients? (bearing in mind

within the finances we have available)

7. What do you like about the model?

8. How will it benefit patients and staff?

9. How will it feel for patients and their

carers / families?


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What is your experience of the services?

Not good

Inappropriate

Poor

What should patients expect from the service?

Definitely access to someone who can give benefit advice

Fair treatment

What should the common standards be?

Communication across teams

Appropriate service

Fair

Geographically equal

How do we make sure this service achieves what it is supposed to?

Work with DWP who will able to provide the benefit information

Dialogue with commissioners that’s effective

How do we make this service the best it can be for patients? (bearing in mind within the

finances we have available)

See commissioners

What do you like about the model?

Holistic whole care team

How will it benefit patients and staff?

More quality of lives

Feedback from the Break-Out Session

Rebecca Patel asked each table to feedback one expectation/standard for the service

Table 1: There should be clear, two-way communication between health care professionals and

patients/carers


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Table 2: There should be timely, comprehensive triage by an expert practitioner, in conjunction

with patients to understand what’s real and important to them.

Table 3: People should be able to access community neuro-rehabilitation services before being

discharged from hospital

Participant Pledges

As part of the event, participants were asked to make a personal or organisational commitment

to the work the neuro-rehabilitation network, to ensure this work continues. Below is a

selection of pledges from the evening.

Be a great Chair of GMNA

Deb Troops

I would like to represent patients and service

users to commissioners

Theresa Travis

Deb Troops

Keep pressing for maintenance therapy for people with

long term conditions

Feedback to GMNR ODN own user evaluation of

hydrotherapy in Bolton

Marie Oxtoby

I pledge to present your views to the decision makers of Devolution Greater

Manchester and circulate your thoughts and ideas to them for comment

Rebecca Patel

To share details of the event on the website so

that people who couldn’t attend have the

opportunity to comment and share their

experiences

Zoe Coombe


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Next Steps

Develop a set of standards from your feedback and insight

Enable your insight to develop the service specifications

Speak with commissioners

Report back to you in four months-time about the plans for the service

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