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Inside

„„Staying healthy and leading an active lifestyle

Don’t miss Featuring

„„Turning Point in Action - Spending Review

„„Health Spotlight

„„Service Spotlight- Hilderstone Road

„„Real Lives - Ryan Gibbs, Artist Extrodinaire


Welcome

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elcome to the Summer edition of The Link. This time we have a focus on health. Health is very much on everybody’s minds at the moment, what with the very unusual heatwave we have been recently experiencing. Health is also very close to my heart having previously worked for the NHS and I am delighted that we have so many different things going on, to which will undoubtedly enhance the lives of people we are here to support. I am part of the Health Toolkit Group which you will read about in this edition, and have enjoyed spending a bit more time with our nursing colleagues. I hope you enjoy the Spotlight on Health...please do let us know what you think. I have been busy since the last edition of The Link, visiting services in Wiltshire, Kent, Bradford, Stoke on Trent and Warwickshire. I am continually impressed by the dedication I see on a daily basis from the staff and enjoy the enthusiasm for all the service improvement projects we have on the go at the moment. We have had a positive response from our Family Carer’s evaluation with 22 people sending back their responses – a big thank you to those who let us know what you think. Look out for the results in the next edition of The Link. As ever we are still looking for Family Carer stories to feature our Carer’s Corner. So if you have a story please contact claire.moszoro@turning-point.co.uk we would love to hear from you. My last words are just to say that I am really keen that people know what I get up to on a monthly basis and have started a very short monthly sheet that encapsulates what I have been doing. If you haven’t seen these and you are interested please just ask; they are now sent round to all staff. I would welcome feedback from you to see if you feel it of benefit. Enjoy the summer, it may well continue to be a scorcher. Best wishes,

Fiona Ritchie Managing Director Learnign Disability Services Turning Point fiona.ritchie@turning-point.co.uk

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Contents In this issue Health Spotlight The right to receive good healthcare

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Key Reccomendations The confidential inquiry into the deaths of people with learning disabilities

Real Lives

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Hospital experience

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Staying Healthy and Leading an Active Lifestyle

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Service User Involvement Tony meets the Chief Executive’s Team

Service Spotlight Hilderstone Road, Staffordshire

Real Lives Ryan Gibbs, Artist Extrodinaire

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Turning Point in Action Spending Review

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On the cover:

Esther Sperry from Mary House, Hertfordshire.

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Health Spotlight People with a learning disability have a right to receive good healthcare, but are often being let down by current provision. People with a learning disability have a right to receive good healthcare, but are often being let down by current provision. Over the last year we have seen increasing media coverage of evidence that suggests that people with a learning disability experience poorer health and poorer healthcare than the general population. It was over a decade ago that the need for action to reduce health inequalities experienced by people with learning disabilities was identified. Mencap’s report Death by Indifference in 2007 then brought the issue to public attention by describing the circumstances surrounding the ‘institutional discrimination’ contributing to the deaths of six people with learning disabilities in the care of the NHS. The Parliamentary and Health Service Ombudsman were then charged with investigating the six deaths, which reinforced the urgent need for systemic change within the NHS for people with

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learning disabilities. At the same time that the Ombudsman was reviewing the six cases, an Independent Inquiry was established by the Department of Health in England, which was led by Sir Jonathan Michael. The terms of reference required the Inquiry to learn lessons from the six cases highlighted in the Mencap report. The Inquiry concluded that ‘there is evidence of a significant level of avoidable suffering and a high likelihood that there are deaths occurring which could be avoided’ (Michael 2008; p.53). It recommended the establishment of a time-limited Confidential Inquiry into premature deaths of people with learning disabilities ‘to provide evidence for clinical and professional staff on the extent of the problem and guidance on prevention’. This year in March we saw the findings of a three year study, (led by academics at the University of Bristol and funded by the

Department of Health), find that those with learning disabilities are more likely to have a premature death compared with individuals in the general population. Norman Lamb, the Care Minister described the report as “important and sobering”. The study’s lead author Dr Pauline Heslop said: “This report highlights the unacceptable situation in which people with learning disabilities are dying, on average, more than 16 years sooner than anyone else. The cause of their premature death is not, like many in the general population, due to lifestyle-related illnesses. The cause of their premature deaths appears to be because the NHS is not being provided equitably to everyone based on need.” She added: “We have, over the past few years, been rightly horrified by the abuse of people with

learning disabilities at Winterbourne View hospital and of vulnerable patients at Mid-Staffordshire. The findings of the confidential inquiry into the deaths of people with learning disabilities should be of no less a concern.” In some cases doctors may be making orders not to resuscitate “because” patients have Learning Disabilities, based on assumptions about the quality of life the person would have if they survived. So what is Turning Point doing? Healthcare and Hospital Passports Health awareness plays an important part in the way we support people with a learning disability. The more we hear about how all parts of the health service are struggling to meet the needs of people with a learning disability, and too often fail in their efforts the more we think ‘what more can we do?’ From lots of research


Key Recommendations

The report makes a number of key recommendations. These include:

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The need to identify people with learning disabilities in healthcare settings, and to record, implement and audit the provision of ‘reasonable adjustments’ to avoid their serious disadvantage. A named health professional to co-ordinate the care of those with multiple health conditions, aided by the routine use of portable patient or carer-held health records and the continuing involvement of specialist healthcare staff, who can work with the individual on a long-term basis.

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The identification of effective advocates to help people with learning disabilities access healthcare services.

already undertaken we know that acute hospital provision is an issue in terms of access and quality of care given. We also know primary care has issues with staff just thinking its people’s learning disabilities (diagnostic over shadowing). The apparent lack of staff understanding of adults with learning disabilities is poor in many areas. Ways of optimising the ability of people with learning disabilities to articulate their needs during hospital stays have been proposed and implemented in many hospitals including the formulation of practical tools such as health action plans and patients passports (Department of Health 2009). Mencap’s ‘Getting it

Proactive planning for the future and anticipating needs, rather than responding in a crisis. Guidelines for orders not to attempt cardiopulmonary resuscitation on a person to be revised and clarified. The routine collection of data that provides information about the age and cause of death of people with learning disabilities at national level. The establishment of a National Learning Disability Mortality Review Body to take forward the reviews of deaths of people with learning disabilities.

Right Charter’, pledges to make sure that hospital passports are available and used when treating people with a learning disability and at Turning Point we believe that the improved availability and use of patient passports would empower people with learning disabilities to make active contributions to their own healthcare. Over the past few years our staff teams alongside individuals we support and their family carers have been designing and promoting this best practice tool in all regions.

social care professionals came together to create a passport for people in East Kent.

For instance in 2011 some of the individuals we support and their staff teams were involved with a community of hospital staff, other people with learning disabilities, carers, care workers and community health and

The idea was that people with learning disabilities and their Carers were to be given a copy when they are admitted to hospital. It was hoped that this would help hospital staff to provide the best possible care, through: „„

improving communication

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enabling choice making

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knowing who to collaborate with and

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co-ordinating care effectively

Similar work has been going on in Staffordshire and Stoke on Trent. Where there has been an

agreed hospital passport document for all of the people we support after work with the University Hospital of North Staffordshire. This has now been adopted by other care providers within the region. Feedback from professionals has been that they have found it invaluable in supporting them when people with Learning Disabilities access their services. In our Wiltshire services we have been using the hospital passport for the past few years and have had great feedback from the hospital. This work reflects a community who are committed to working together to improve healthcare services for people with learning disabilities.

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A Project Worker from a Turning Point Supported Living Service tells of a recent experience of supporting an individual with a learning disability to attend hospital. An individual I support is currently suffering from a very sensitive health condition. This has affected her since last November and has had a major impact on the way she chooses to live her life. She is no longer able to attend her day centre as her care needs have increased. My staff team and I have supported her to numerous doctor’s appointments and hospital out-patient visits in order to seek a positive solution, but it’s been a battle. We have done everything we can to support her during this difficult time and to prepare her for her forthcoming operation. Her and her parents have also been involved in appointments, best interest and mental capacity meetings, with outside professionals. These meetings have helped to understand her feelings and concerns about her health condition. She has a basic understanding of the fact she is unwell and wants to get better, in her words “I don’t want to take the medicine anymore”. She understands that by having the planned operation, it is hoped there will be no need for her to take any medication. She believes the doctors can help her. Her health condition is also complicated by Obsessive Compulsive Disorder (OCD) issues. The staff team and I have supported and helped her to prepare for the planned, very involved operation by reading easy-read guides about going into hospital, completing a SPOT and Wellbeing meeting. She has a Hospital Passport and Hospital Grab Sheet. The staff team and her have been managing the health problem and respecting her dignity and privacy as much as possible.

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A couple of weeks ago, her health condition deteriorated very suddenly and after following advice from the out-of- hours GP, we were taken to A&E. Although I gave her a lot of reassurance, she was clearly in a lot of pain and was very anxious. We were seen by a doctor and nurse very quickly, however they appeared annoyed and rather frustrated that we had come to A&E to seek help despite following the instructions of the out of hours GP. In order to make the individual feel more comfortable, the doctor proposed performing quite an invasive procedure at home We explained that we would not be able to support the individual with this at home as we were not medically trained. They appeared to have a lack of understanding of ‘Supported Living’ and the parameters of a Support Worker’s role. We attempted to leave the hospital, but returned as soon as we got out of the door as the individual became ill again. We returned to the doctor, but were made to feel rather uncomfortable, but we were not prepared to take her home in this condition. The doctor decided to admit her, but was very unclear as to where this would lead us. Dialogue between the individual we support and the doctor was limited and slightly derogatory at times. It was very clear to us that the training of doctors in supporting those with learning disabilities is limited. We gave the individual lots of reassurance as she appeared concerned at this unexpected admittance. The next day my Team Leader returned to the ward. The team looking after individual appeared


relieved and asked my Team Leader to support her with her personal care and breakfast, despite her lying very calmly in her bed. The Consultant made the decision in the morning not to go ahead with an emergency operation as he did not have the team in place over the weekend to perform the operation he hoped to do. He explained, if he were to operate that weekend, it would only be a temporary solution and not as involved as the one planned. The consultant assured us he would ‘escalate’ her operation, but assured us that ‘people do live with this’. At the advice of the consultant, she was discharged and advice was given to

the individual’s team as to how we should support her should she become unwell again. The individual appeared very keen to leave the hospital. We are still awaiting her operation date. In the mean time the staff team are doing our best to continue to support her and promote her wellbeing, choice and control and continue to prepare her in the best way possible for her forthcoming operation. Having an extremely high pain threshold, it is incredibly difficult to know when she is in pain or be able to locate exactly where the pain is. On this occasion it would appear that the person-centred approach was totally dependent on the team supporting her from her home, rather than the hospital.

Information Point Health Action Plans Every person receiving support also has a health action plan which supports staff within Turning point and primary care to understand people’s health needs better. They are pictorial and are completed with the person in question. We are currently reviewing the paper work to make sure we have everything as up-to-date as possible.

Health Toolkit A group of nurses in Turning Point’s Learning Disability Services are coming together to write a tool kit for support workers to aid them in thinking, observing and gauging people’s often complex health needs. The tool kit will involve issues such as tissue viability, urinary tract infections, dysphagia (swallowing difficulties) and chest infections to name a few. This tool kit will have practical advice and top tips to aid support workers to advocate more strongly when taking people to their GP or acute hospital if this is necessary. We hope to have this in draft form by October 2013.

If you would like to share yourexperiences around healthcare or any other topic, we would love to hear from you. To get in touch you can email: LDInvolvement@turning-point.co.uk

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Staying healthy and lead There is an enormous range of potential health benefits associated with physical activity. Many of which are particularly relevant for people with learning disabilities. Evidence suggests that habitual physical activity is a missing component in the lives of many people with a learning disability. People we support with a learning disability across the county seem to be doing a great job of proving this evidence wrong! Here are just a few of the people who wanted to share how they keep fit and active and stay healthy.

Philip Gray lives at Wiltshire

Supported Living. He attends the local LA fitness centre 2-3 times a week. Philip is very motivated and can happily run on the treadmill for anything up to 45 minutes, followed by 15 minutes on the rowing machine and 10 minutes on the bike but, Philip needs very little encouragement from the staff. When asked what he likes about attending the gym Philip is always keen to tell us “My stomach will go right down.� He also attends Sailability once a week where he joins a Skipper out on a local lake for half an hour of sailing. Philip also attends riding for disabled individuals weekly.

Pauline Quinton has been a member of the Salisbury Dolphins Swimming Club since

September 2011. At that point, Pauline had not been swimming since her childhood so she was initially very nervous about getting back in the pool again. Pauline has attended weekly sessions at Salisbury Dolphins and her confidence has grown week by week. Staff support Pauline to complete a variety of exercises both in the pool and sitting on the side. She has started to lead these exercises and comes up with new ones for her and staff to try. So far Pauline has completed her exercises in the learner pool where she can walk around easily. Pauline and her staff team hope that one day she will brave the big pool and have the confidence to learn to swim! Pauline has several friends at Salisbury Dolphins and they encourage each other with their fitness and improving their skills in the pool whatever stage or level they are.

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ing an active lifestyle Esther Sperry lives in her own flat supported

by Turning Point in Hertfordshire. She is a very independent lady and started Trampolining three and a half years ago. She has very recently passed her Level 6 award, from the British Gymnastics Association for Trampolining. She is very proud of her achievements and it looks like the sky’s the limit for Esther.

If you are supported by Turning Point and would like to share your story please email: LDinvolvement@turning-point.co.uk

Lucy Hackett is supported by Turning Point in Wiltshire.

She has been a member of Curves gym for a number of years and understands the benefits of maintaining a balanced diet and going to the gym regularly. Lucy enjoys taking part in circuit training as she can choose from a variety of exercises that both help her to stay healthy and which she enjoys. Lucy has been trained by the gym staff to use the equipment correctly and safely. Going to the gym is also very important to Lucy because she has built friendships with other members and enjoys chatting to the instructors and other staff members.

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Service WelcomeUser Involveme Tony meets the Chief Executive’s Team Involving service users in the decisions about the services we provide is right at the heart of the Turning Point way of doing things. a chance for them to ask me some questions about my new home, Reevy Road. However, the meeting went really well and it also gave me the chance to ask CET some questions of my own. At the end of the meeting I invited them to Bradford to join me at my local pub for

breakfast. I am looking forward to taking them. I was over the moon when Victor awarded me a certificate for making the journey to London. I had my picture taken with Victor which will sit pride of place next to my certificate in my bedroom. Whilst in London I got the chance to go and

Lucy Web, Support Worker, Ashfield, Bradford said:

victor presents tony with his certificate of involvement in the cet meeting

Tony Marsh lives in Bradford and has recently moved house. He was invited to talk to the Chief Executive’s Team (CET) to share his experiences with them here is his story: On the 6 June I made the long and tiring journey to London to meet

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the CET with my key worker Lucy Webb. On the way to London I was quite nervous about meeting the team as Lucy had mentioned that there would be

“Tony had a really enjoyable time whilst in London I think the highlight of his trip was meeting Lord Victor and getting the chance to ask his team some questions that a lot of people would have wanted the answers to and of course having his photograph taken with Victor. As tired as Tony was as soon as he arrived home he could not wait to show the rest of the team his certificate and how much fun he had in London. He had that much fun he now wants to go back and spend a few more days doing the things we didn’t have time to do. So hopefully the Queen will be in when we come again.”


ntContents see the Queen, who was actually in when we arrived although I was a little disappointed

that she had forgotten to invite me to her garden party, maybe next year she will remember!

I also went to see the Prime Minister, who unfortunately was also too busy to invite me in for a cup of tea. So Lucy and I hit the shops whilst in London which I was happy about as I love shopping.

I took lots and lots of photos which if anyone knows me, I am a little snap happy when it comes to my camera so my photo album is now full of my two days in London.

Julie Bass, Assistant Chief Executive said: “The team found Tony’s visit insightful and invaluable. By having people we support meet us we get a first hand story of what it is really like. Tony was shy to begin with but soon put us on our toes by asking questions such as, “So what do you do then?” Having Lucy there was also helpful, as she was able to tell us her issues and what she thought of some of the topics we discussed. We found it so valuable that we are going to start this across all sectors. Well done Tony and Lucy.”

Tony meets one of the royal horseguards

If you would like to share your ideas about improving our services, at Turning Point we’re ready to listen. Your local Service Manager is a good place to start. Or you can email: LDInvolvement@turning-point.co.uk

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Hilderstone Road Staffordshire Hilderstone Road is a new Supported Living service for seven adults with learning disabilities and complex needs, who previously lived in residential care for a number of years. The service opened in February this year. Staff are available on site 24/7 with each individual receiving a combination of shared care hours and individual 1:1 hours. As it was a total new build the individuals and their families were able to be involved in some aspects of the planning of their own homes, choosing their own kitchen colour schemes, worktops and cupboards etc. It also enabled us as care providers the opportunity to work together with landlords, Sanctuary Housing, to tailor the flats to meet very specific individual needs for each person and to promote their safety and independence as far as possible within their flat. Initially through the planning permission stages, there was some negative press and comments raised by neighbours over the role of the service and the individuals that they perceived would be living there. However since moving in to Hilderstone Road, we have now been able to develop the relationship we have with our neighbours on a more friendly and positive level. At Easter, children from the local primary school personally delivered fresh flowers to all the tenants in a bid to welcome them to the neighbourhood. Contact with the school was made and earlier this month, Helen an individual we support was invited to visit the school and give a presentation to a small group of children from years 5 and 6.

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Helen has no verbal communication but was supported by two of her support team to share her story with the children. Helen showed the children what it means to her to have a learning disability, how her life has changed since moving into her own flat and how her parents now visit regularly for lunch. She also expressed her future dreams and aspirations. Helen took a tin of homemade chocolate cookies for the children, which she made with the help of her support workers as a kind gesture for the lovely flowers she received. The morning went extremely well. Helen thoroughly enjoyed meeting the children and sharing her cookies. Feedback from the head teacher was that most of the children had never previously met anyone with a learning disability and had little understanding of what it meant. They were unaware of the range of support that some individuals needed on a day to day basis, but meeting Helen has changed their understanding of this. Helen was invited to attend the schools end of year concert dress rehearsal. This is hopefully the start of a good positive relationship.


, s b b i G Ryan Artist e r i a n i d Extraor In the Winter Edition of The Link you may remember we requested submissions from the individuals we support to turn their artwork into Turning Point thank you postcards. Ryan Gibbs is supported by our Kent Supported Living Services. He responded to the request for art work and sent through some simply superb copies of paintings he had created. After an overwhelming response from all those who saw his artwork we wanted to meet the man behind the paintbrush. I was lucky enough to have Ryan invite me to see the pieces he had submitted in their full glory on the canvas’ hanging on the walls of his home. Ryan told me a bit about his inspirations and a bit of background on the paintings. He started painting when he lived in Newham, London when he was about 13. A tribal style could be seen coming through on the image he had recreated of Buddha, who his Dad had always been interested in whilst growing up. Ryan showed me some other pieces of his art which included famous iconic women such as Marilyn Monroe, The Queen and Liza Minnelli. “They all have interesting faces which I enjoyed painting.”

from left to right: ryan gibbs(artist) and claire moszoro

I was very excited when Ryan told me he was working on a painting for his brother’s birthday present. I was lucky enough to have a sneak peak at his latest creation. It didn’t disappoint. His painting of Bob Marley, who his brother is a big If you are supported fan of, was as cool as the man by Turning Point and who painted it. like Ryan would like to A big thank you to Ryan for share your story please sharing his art work with us. email: There is no doubt you will go far! LDinvolvement Claire Moszoro, @turning-point.co.uk Engagement Lead

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Turning Point in action

Raising Awareness of Soci Spending Review On Wednesday 26 June the Chancellor announced the Spending Review setting out budget plans for 2015/16. The tone was set by the Chancellor reiterating the Coalition’s commitment to address the deficit (down by 1/3 since 2010). Borrowing was £108bn this year and there still needs to be £11bn more in savings found to end the deficit. average rise of 1% in 2015-16 (effecting schools, NHS, prisons and police)

Sarah Reed External Affairs Manager Turning Point

S

„„ There will be further reductions in the number of people in the public sector – A recent Office for Budgetary Responsibility (OBR) report states there will be a reduction of 144,000 people working in the public sector by 2015/16.

ince 2010 the UK has seen the slowest recovery in 100 years with growth of 1.1% instead of a predicated 6%. Key messages from the Chancellor included the need to ‘live within our means’ however the plans for 2015/16 represent ‘Britain on the rise.’

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Below are relevant announcements made by the Chancellor, based on three guiding principles:

1. Reform Public sector workforce „„

There will be no more automatic pay progression in the public sector and public sector pay rises will be limited to an

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Three years ago George Osbourne stated that each public sector job lost will be replaced by the private sector – he claimed this has been the case with each public sector job lost being replaced by 3 in the private sector. Government Departments including Communities, the Ministry of Justice and the Cabinet Office have all reduced their

budgets by 10%.

3. Fairness

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There was some good news with £3bn capital investment being made in affordable housing and the Troubled Families programme will be extended to reach a further 400,000 families.

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The key messages around fairness is that all sections of society have to play their part but the top fifth will lose the most in this spending round. The richest 10% have paid the most (via income tax).

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The Council Tax freeze will continue for the next two years (originally due to end next year)

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The NHS : ‘not only the Government’s priority but the people’s priority’

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The NHS budget was £96bn in 2010 – it will be £110bn by 2015/16 + capital spending will be £4.7bn.

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The ageing population means demand is rising however savings have been made there are now 7000 fewer managers in the NHS

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F urther efficiency savings need to be made to invest in cancer treatment and mental health –

2. Growth „„

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There will be investment in transport links, education and innovation including £50bn capital investment in 2015. School spending was protected in real terms and will be allocated more fairly based on a national funding formula to be consulted on.


al Care this is very welcome and highlighting the commitment to achieving parity between physical and mental health. „„

There will be over £3bn spent on cocommissioned services (between the NHS and local government) by 2015 - a ‘historic commitment to social care tied to real reform on the ground to stop the scandal of older people trapped in hospitals because they can’t get a social care bed.’ Although focused on helping older people to stay

a welfare cap is to be introduced for the whole system set each year in the budget which will apply from April 2015. When the government looks to breach the cap the Office for Budget Responsibility (OBR) will issue a public warning and the gov’t will need to take action to reduce spend or explain why they are breaching the cap.

out of hospital, this will be something we monitor closely and will try and influence to broaden the spectrum of the government’s approach to social care which is embedded in older people, often forgetting people who are disabled or with other complex needs. „„

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Welfare: Announcements focused on reforms being fair for recipients and people who pay taxes. T he big announcement was

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influencer activity through membership organisations like the Care and Support Alliance to ensure that this cap is set at a level that is not detrimental to people’s wellbeing and independence. „„

Housing benefits and disability benefits both included within the cap but the state pension is not. This will form part of our

A new 7 day wait will be implemented before people can receive benefits. This is worrying, particularly for the people we support who have chaotic lives, we will look into this proposal and its impact further.

Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) In a number of services across the regions we are finding that some people have a DNACPR placed on them when they are admitted into acute care. This has not always been done through best interest meetings (which best practice states it should) and has not therefore involved all relevant people. When we find this out we of course challenge it but it is not always obvious that people have them and sometimes it is not easy to change it (if appropriate). We are very concerned about this. We have set up a project where Becky Gorringe a project worker from Wiltshire will be supported to do a research piece to look at all aspects of this area. We have released her for 6 months to do it. We will be looking at: „„

The best practise around DNACPR

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Ensuring staff understand this topic

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Tracing every person we support to see if they have a historical DNACPR placed on them

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Ensure the people who have DNACPR has been done according to best practice and

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Challenging where appropriate

We will then act on any findings and write this up for a journal as we understand this is a wide spread issue.

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The Link has been designed for you. It’s about you and the people you care about, connecting families and carers of people with a learning disability from around the country. Please tell us what you think and how we can make it better next time.

What is important to you? What you say matters and we want to share your ideas and stories. Tell us more about what you would like to read about.

Get in touch today Tell us what you think by emailing

TheLink@turning-point.co.uk or via post to The Link, Turning Point, Standon House, 21 Mansell Street, London, E1 8AA Letters may be edited. The Link will be distributed quarterly. If you would prefer not to receive it, you can opt out by emailing the address above, or via telephone on 020 7481 6228.

www.turning-point.co.uk

Useful Numbers General Turning Point enquiries: Standon House (London)

020 7481 7600 The Exchange (Manchester)

0161 238 5100

Ideas, comments and stories:

thank you

Claire Moszoro Turning Point

020 7481 6228

Turning Point is a registered charity No. 23454565. Address: Standon House, 21 Mansell Street London, E1 8AA

The Link Summer 2013  

Bringing families and carers together

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