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September/ October 2015 CONTENTS What’s on in CQC? Page 1 Stories from Experts by Experience Page 3 Experts by Experience Training Page 7 Experts by Experience bulletin working group Page 9 Top Tips Page 10

Halloween Edition What’s on in CQC?

State of care report launched on 15 October 2015 CQC published the State of Care report, our annual overview of health and adult social care in England, on 15 October 2015. For the first time, we have been able to draw on the findings of our new ratings system across all of the sectors we regulate. Our analysis shows that, despite increasingly challenging circumstances, many services have managed to either improve or maintain quality. Also for the first time, we have used the report as a vehicle for some of our statutory reporting on equality, focusing on what we know about equality for people using health and social care services and staff working in those services (see Page 11 of the Summary report, or Page 21-24 and pages 104-116 of the full report). You can read more at: State of Care launch 2015 ExE Rafik Hamaizia, from Choice Support, took part in a video for the launch at extremely short notice. Rafik is also a member of the ExE bulletin working group. Well done to Rafik for speaking up for people using services! You can watch the video here

New National Guardian role to lead a more ‘open and hon-est’ NHS so that patients get better and safer care The consultation for the National Guardian Officer was launched on 17 September. The National Guardian has been created as a result of recommendations from Sir Robert Francis‟ Freedom to speak up review and will be based at CQC. The independent role will provide high profile national leadership to a network of Freedom to Speak Up Guardians across NHS Trusts. These guardians are another important way of creating a culture of openness across the NHS. You can give us your views about our plans for how the National Guardian role might function by filling in the consultation web form by 9 December.

Experts by Experience Bulletin

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Review to look at the care of new born babies that need extra support A review of the care of new born babies that need extra support is being carried out to look at how infants with deteriorating health are cared for by hospitals and by community services. This thematic review of about 20 services in England will look at how well staff in fetal medicine, obstetrics, neonatal and community services work together to care for new born babies with declining health problems; particularly those with hypertension (high blood pressure) and tracheostomies. We are going to use this review to look at variation in the care management and how one service hands over to another service so the care is continuous. The review which started in September 2015, will also report on how well the services work together and follow up any complications during pregnancy. We expect to publish our findings next Spring (2016). This review draws on the experiences of the Dixon family. Elizabeth Dixon died in 2001 as a result of failures in the tracheostomy care she received at home, while under the care of a newly qualified agency nurse. Find out more here.

Update on CQC developing a new strategy for 2016 to 2021

In the last ExE bulletin, we talked about CQC currently developing a new strategy for 2016 to 2021. It is scary, but also exciting, to think that CQC has grown up so fast and is looking forward to developing the new strategy with the help from all of you! We will shortly be publishing our view of the direction we need to take to continue to make sure health and social care services provide people with safe, effective, compassionate, high quality care, and that we encourage improvement. We will be gathering views through a set of accompanying questions on the CQC website. This will be available from 28 October. After reviewing feedback we will publish a vision document in January 2016 as the basis for formal consultation. Publication of the final Strategy will follow in April 2016.

CQC will also be asking for views on developments that could be made as the current programme of hospital inspections end and how lessons learnt are applied. Further details including the survey will be available on the CQC website shortly.

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Experts by Experience procurement We are currently evaluating the bids and aiming to announce the awards in due course. Watch this space for the announcement.

Stories from Experts by Experience It‟s Halloween time! Two of our Experts by Experience talked about their “scary” experience of doing an inspection, but the end results were glowing! Edwin Rosier, Expert by Experience Edwin joined Age UK in June 2015. He describes how his personal experience of care led him to become an ExE.

―It was the experience of supporting my mother whilst she was living in a care home – the benefits and the disadvantages — the good care and the poor care — that left me feeling that, given the chance, I would like to do something where my own experience could prove helpful to those in a similar position.‖ When asked what his first inspection as an ExE had been like, Edwin said: “Scary, frightening, spooky (and that was just meeting the inspector)! Only joking of course, the inspectors that I‟ve met have all been very reassuring and proactive in their support for the ExE provision.”

Edwin went on to explain that he had convinced himself, having read back-ground information, that this was going to be nothing short of Key Lines of Enquiry perfect – but that he had been in for a shock. Although he is familiar with care homes through family and work experience, he felt the reality of his first inspection was quite different. Edwin explained that he now approaches each inspection without any preconceived ideas. He was asked, after the initial shock, how he felt about what faced him? Edwin explained that for a new ExE it can be daunting to be in this situation and had some advice/tips that may be helpful to others:

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1. If you are confused about the environment, take some time to just observe,

find out residents‟ and staff names and orientate yourself with the layout of the premises.

2. Make a note of who you may wish to speak to later, including any residents

who may have additional communication needs so you can factor in more time to speak to them and leave flexibility to speak to any relatives or visitors who may arrive.

3. Keep it simple to start with, use your pre-arranged questions and any that

the inspector specifically needs you to address. Prioritise your questions so that, with limited time, you have asked the key questions.

4. Timetable your visit so that you can observe events such as an activity you

feel would be relevant or lunchtime, but leave flexibility to respond to the situation as it evolves.

5. If you‟re not familiar with a whole host of acronyms and terms and feel

uncertain as to what you should say if asked to give verbal feedback, keep to the facts, but make a note of other things that you‟re not sure about and feed this back to the inspector, letting them decide if it is relevant.

Though his initial inspection was scary, Edwin recently received glowing feedback from an inspector: ―Dear Edwin, Your notes from the inspection on Monday were brilliant and your support invaluable. I am flagging this up because you said you had only done a couple of inspections and I would like to see you doing many more and would certainly recommend you.‖ Shirley Christopher, Inspector, Adult Social Care Edwin would like to recommend to other ExE two books that have helped him in this work. The first is “Listen, Talk, Connect” , published by Care UK which was recommended by another ExE when attending a course held by Age UK on dementia.http://www.careuk.com/sites/default/files/CareUK_Dementia_Guide.pdf The second is “Behind those Care Home Doors “ by Adeline Dalley, which Edwin describes as “the perfect introduction to „imperfect‟ care homes.” http://www.blackmorevale.co.uk/care-home-doors-new-book-read-involved-care/story-20754429-detail/story.html

Jamie Noon, Expert by Experience Jamie, is an ExE with Addiction Dependency Solutions. Jamie‟s view on making first inspections is less hair-raising.

―I would like to see a buddying system in place. If an experienced ExE attended first inspections with new ExEs it would relieve pressure on the inspector too.‖

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I did my first inspection at a general hospital two-and-a-half years ago. There were 120 members on the inspection team! As they each stood up in turn and announced who they were and what they did, my heart was racing. They were all highly qualified professionals, many of them doctors. When it was my turn to speak, I was terrified. I‟m an ex-heroin addict. What had I got to offer? “I‟m an Expert by Experience by substance misuse…… and I have a GCSE in metal work,” I declared to make light of it. Overcoming my fears by using humour and honesty broke the ice. Several people came up to me afterwards and told me: “I love what you said!” As much as the training beforehand helps, nothing can prepare you for the real thing, especially big inspections like that. In the early days I felt daunted because I didn‟t believe I had much to offer but now I know it‟s irrelevant what you do professionally; it‟s about what you deliver. I would have felt more comfortable in a substance misuse service but, as a drug addict for 17 years, I had often used A&E services so it was relevant that I was on the team. I was there for four days. I didn‟t get any feedback from that inspection so I don‟t know how I did. Looking back, I made mistakes and there are things I‟d have done differently - but you don‟t „get it‟ straightaway. I‟ve grown in confidence since then, and done around 80 inspections. However, I don‟t allow myself to get complacent as you never know what‟s round the corner! Each inspection has different dynamics and each inspector works differently. Now I know what inspectors want me to concentrate on I can work independently, which frees them up. I feel really valued and often get asked back by the same inspectors. I also do talks to new inspectors at the CQC training academy about what it‟s like to be an ExE. I love the CQC, and believe in it and what we do. During my addiction, I didn‟t realise how poor some of the care I received was because I had nothing to compare it with until I got into a good quality service. It means I can bring what good and poor care look like to the inspections. I also have empathy with the people who use the services and can connect with them. I‟ve been clean for three-and-a-half years, and the positive, trusting relationships I form in my ExE work, and the responsibility I‟m given, make it even more attractive for me to stay clean. Also, the CQC is respected in other sectors so it‟s great to have my ExE work on my CV. It‟s opened doors for work in other drugs and alcohol detox services. It was great to get such good feedback from Karen – and it was the first time I‟d worked with her!” ―Dear Colleagues, I am writing to express my sincere thanks for the services of Jamie Noon on my recent inspection. Jamie presented himself exceptionally well throughout the inspection. He was courteous and polite throughout and engaged very well with the patients within the service we were inspecting. Jamie demonstrates a great deal of empathy towards the patients and was able to interact throughout the inspection with both patients and staff to a very high standard.

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His contribution towards the success of this inspection is to his credit. I would be very happy to include Jamie in any inspection team in the future. Please pass on my grateful thanks to Jamie on my behalf.‖ Karen Holland, Inspector, Hospitals Directorate

Janice Tillett, Expert by Experience Janice an ExE with Choice Support, talked about living with deafblindness and her passion of awareness raising about deafblindness. Married to a train driver and mother to a highly active nine-year-old, I am now in my early forties. Following an international swimming career including two silver medals at the Barcelona Paralympics, I worked for several years for national charity Deafblind UK.

When I was younger, I was registered as partially sighted and could see about six me-tres ahead with glasses. Due to a progressive condition which also affects the joints (I recently got two new hip joints), I am now completely blind. However, with the help of bone-anchored hearing aids (BAHAs) I can hear clear speech and use modern software to access documents, texts and emails. Being deafblind doesn‟t mean you can‟t lead a full and fulfilling life, but it does have its challenges – not least, the attitudes of the general population and those in public services. I hope very much that my input as a deafblind Expert by Experience will contribute towards rectifying that situation by changing

attitudes. Having travelled internationally and met people from all walks of life, I am shocked at the lack of awareness of the needs and lives of deafblind people: Many people in the UK, including some MPs, can‟t believe that anyone

can really be both deaf and blind. Yet people with a sight or hearing loss have the same risk as anyone else of acquiring a hearing or sight impair-ment later in life.

Most people, including many taxi drivers and even some police officers, do not recognise the red and white stick as a symbol of deafblindness, even though it is in the Highway Code.

Another common misperception is that simply providing for wheelchairs makes a building or public place fully accessible for disabled people.

All this shows how urgently deafblind input is needed. The definition of deafblindness is a combined sight and hearing loss which has a significant impact on daily life, accessing information, communication and mobility. In the UK, 394,000 people fall within this broad definition, ranging from people with mild hearing loss and partial sight to those who are totally blind, profoundly deaf and able to engage only through tactile communication.

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Broadly speaking, there are four groups of deafblind people: Congenital deafblindness. One cause nowadays is premature birth,

eyes and ears being among the last organs to develop fully. A major cause previously was Rubella (German measles) in pregnancy.

People born deaf who later acquire a sight loss. A common cause is Usher syndrome.

People born with a visual impairment who later acquire a hearing loss. Acquired deafblindness. The largest group, usually due to age but

sometimes due to accident or illness. Deafblind people are encouraged to maximise useful sight and/or hearing to access information, communicate and get around with whatever equipment and/or human support is needed. Those born with no sight or hearing and difficulty learning formal communication may use objects of reference, for example, picking up a cup to signify thirst. In addition, Modern software for PCs and smart phones can provide speech output,

magnification and Braille keyboards enabling both input and output. Equipment for the home includes alarm clocks and smoke alarms,

attached to another unit that vibrates to alert the user. The vast majority of deafblind people have sufficient hearing to receive clear speech (louder, clearer, slower and with a neutral accent). Clear speech may also be supplemented by touch - a firm touch within neutral body space - from the top of the shoulder to the top of the wrist will attract a deafblind person‟s attention. Two variants of British Sign Language (BSL) can be accessed by deafblind people: visual frame and hands-on. When booking an interpreter, it is important to establish which variant the person can access. For those who can neither hear speech nor access BSL, there is the deafblind manual system whereby information is given and received by signs on the fingertips and palm of the hand. Deafblind people also seek to maximise “useful” sight and/or hearing when getting around. Some use human communicator guides. Others have sufficient sight to walk independently or with a symbol or long cane. Guide dogs and hearing dogs can assist both indoors and outside. I know from experience how much still needs to be done to improve understanding of deafblindness among people employed in health and social care. As an Expert by Experience, I hope to help make services and buildings fully accessible to all disabled people, including those living with deafblindness.

Experts by Experience Training ExE support organisations are working hard to train and support our ExEs. Victoria Jones, a member of the ExE bulletin working group, talked about the dementia training organised by Age UK in the autumn.

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All Age UK experts were invited to attend dementia training during the autumn. A big ask, I thought, for Age UK to put on training for such a large group of people, many of whom have years of caring for someone with dementia, while others may not think they are experts and may want a magic formula as to how to approach and interact with people who have dementia. So there‟d be me, ready to take offence the first time anyone said „they‟ about people with dementia, and maybe others who were hoping there are easy answers. The positive start was that the training was in Exeter which meant that instead of travelling for a couple of hours to Bristol, my journey was only a few minutes on the train. I was confident I would see fellow experts who I‟ve got to know through other training events, and it involved Innovations in Dementia, an organisation that my husband Nick and I had worked with on a project a few years ago at an earlier stage of his illness. Their website is innovationsindementia.org.uk and they‟ve done lots of work to promote a positive image of people who are living with dementia. Most promisingly, we knew that experts were involved in shaping the content of the day. Ours was the first day of the training, so we were asked to give feed-back which would help in developing future days. The days had been planned for up to 20 people which was good as it meant plenty of time would be left for discussion but there were only 5 of us so I don‟t think we‟ll get training in Exeter again! We had a new ExE for Cornwall, Keith. We gave him a round of applause as he‟s doubled the numbers in Cornwall! But what could this „training‟ involve or achieve in a short time? I‟m used to hearing from care staff that they‟ve done dementia training, and even in homes which have been given various Kitemarks and call themselves „specialist‟, it often seems to have had little or no impact. In a hospital inspection recently, I asked in Outpatients what the „dementia friendly‟ signs (large purple flower pictures) would mean if I was sitting there for an hour with a person with dementia. The answer amounted to not a lot, so I am a bit sceptical about the usefulness of symbols or training. The good news was that nobody said „they‟ about people with dementia, and the message was clearly given that if you have cared for one person with dementia, you know that one person, not all about dementia. I breathed a sigh of relief, as Damian from Innovations in Dementia, set us interactive tasks demonstrating that we would all react differently to the situations people with dementia are put in – such as an apparent stranger taking us to the loo or taking off our clothes – just as the person with dementia will react as an individual with a personal history and store of experiences. The difference is that our reactions will be seen as understandable, whereas those of people with dementia may be treated as „challenging behaviour‟. Damian had good techniques for ensuring that we were interacting and involved, and he kept us engaged, although he did introduce himself as a „dementia guru‟ and I‟m still not sure whether he was serious. The second session was ably managed by AgeUK ExE Suzy and Sarah who were able to share practical tips and experiences from their work and personal lives. In the afternoon, we had more thought-provoking exercises from Damian which were directly relevant to our work and led to lots of discussion.

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Experts by Experience I know will say the best thing about any training we get is that we can talk to each other in the breaks and it‟s perhaps hard for others to appreciate just how isolated we can feel in our work. By the time you read this, I believe the new contracts will have been or soon be awarded. Let‟s hope we have more opportunities for sharing our experience in local meetings and that when we are offered training the expertise of the pool of experts is utilised.

Experts by Experience bulletin working group The ExE bulletin working group is continuing their work with some new members having joined recently. In this edition, a new member, Gail Golding (second from left, back row) from Choice Support, introduced herself: “I became an ExE over two years ago. Having experienced mental health problems I saw it as a great opportunity to be able to use my own experience of having used services towards improving them. Since then, I‟ve completed over 40 inspections. Last year, I also did the training for Domiciliary Care Agency inspections and went on the CQC training for dementia inspections. I have a 93 year old mum who suffers from very fragile memory difficulties so I know inside out the difficulties of wading through the system seeking the best care. Now, when I do Adult Social Care or DCA inspections, I always ask myself: „Would I let my mum be here?‟ If so, what type of service would I expect? I‟ve worked with so many different inspectors and noticed several different ways of working. Some inspectors organise a very tight structure, whilst others prefer something looser. I work comfortably with both, as long as the inspector has been clear from the outset about how they see my role on the day and where they want me to focus my attention. I expect to be treated equally to the rest of the team and, on the majority of inspections, I am. In the past I‟ve worked in several different places, including a mental health day centre and manager of a Mental Health Advocacy service. Currently, I work as a teacher of English as a foreign language (I teach in a language school and language club; do private teaching; and run my own small business of organising English conversation walks in different areas of London). Doing two jobs that are completely different works really well for me. I thrive on variety!” In the next issue, our other new member, young ExE Jason Monero (front middle) is going to say a few words about himself.

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Top Tips Apart from the top tips shared by ExE Edwin Rosier from Age UK in the above ExE Stories section, two more CBF ExEs, Jane Alcock and Lucy Kaya, both members of the ExE bulletin working group, also shared their top tips. Jane Alcock (third from right, back row)’s 2 top tips are: If you observe something that, on the surface, appears to be negative, dig

deeper, as you may see a service working as well as it can in a very challenging situation.

Check with the inspector and/or your support agency what is within the service‟s remit before criticising the service for something that it may not have ultimate control over.

Lucy Kaya (first on the right)’s 3 top tips: Don‟t be afraid to dig deeper. If you have a concern, feel confident in raising it. Your support organisation is a great resource – use it! Have you got any top tips from your inspection work and would like to share with other ExEs? If yes, please send your top tips to your support organisation and we will include them in the future bulletins.

Have you got any suggestions on what other topics you would like us to cover in the ExE bulletin? Please send your suggestions or ideas to your support organisation.

HAVE A HAPPY HALLOWEEN