How can we promote well-being?
UK Health and Learning Disabilities Network’s October Event.
Rosemary Trustam attended this conference dedicated to Connor Sparrowhawk whose death in health service care was preventable.
Radical change is needed in the way authorities connect with people. Simon Banks, Chief Officer NHS Halton Clinical Commissioning Group (CCG), who chaired the event, made clear his strong commitment to inclusion, engagement and joint working.
His words were echoed by Dave Sweeney, the Director of Transformation in NHS Halton CCG and Halton Borough Council who are pioneering pooling resources of £42 million. Halton prioritises mental health and mental resilience in young people.
Halton wants its young people to have real life chances. Dave Sweeney’s radio show on health bravely invites the public in. Most of their use of the government’s mental health money goes on well-being and social enterprise projects like SPARC (Supporting People Achieving Real Choice). Seventeen wellbeing practices use social prescribing and offer different options. They want education and public health to collaborate and provide increased health checks.People could be prevented from slipping through the net if there were a single point of access.
We were reminded of the shock finding by the Confidential Inquiry into the Premature Deaths of People with Learning Disabilities (CIPOLD) that women with learning disabilities died 20 years earlier and men 13 years earlier than the general population – and the gap is not closing.
Unresponsive GPs
Chris Hatton, Co-Director of Improving Health and Lives – Learning Disabilities Observatory (IHaL) said the reasons included early symptoms not being identified and treated and the unresponsiveness of GPs and health services resulting in significant delays(1).
A study by Dr Irene Tuffrey-Wijne in 2013 on the safety of people with learning disabilities in hospital found similar issues:
• learning disability was not identified;
• staff did not understand the changes needed or the requirements of the Mental Capacity Act;
• communications were inconsistent;
• action was not taken because lines of responsibility and accountability were unclear;
•hospitals were unwilling to pay for support from carers who knew the person.
The study did find some good practice examples but too often these were not shared, even internally.
It strongly recommended that learning disability liaison nurses, at a sufficiently senior management level to change practices, should be appointed.
Under the Health Services’ Disability Equality duty barriers to access should be anticipated and removed and policies, procedures, staff training adjusted, including GP appointments. The invitation letter of the National Bowel Cancer screening is complicated – an easy read one can be requested but why not have one initially? On an NHS helpline 111 call, the responder spoke fast, was confusing and used hard words. Telephone and text messages sent by hospitals were good but one sent by the GP had jargon.
Chris Hatton plans to look at the evidence for the Care Quality Commission (CQC) by hospitals on the audit of care for someone with learning disabilities; other CQC questions include whether they have any current patient with learning disabilities, what reasonable adjustments they make, and if they have a specialist learning disabilities nurse. All trusts self-rating as compliant was not credible.
Public health education and support would prevent more deaths through physical exercise and healthier eating, but public health needs to understand how to get messages to people who are often ‘invisible’. Only a small proportion are known to adult services and are too often set apart from communities which is a serious risk to health.
Connor Sparrowhawk, for example had lots of labels and epilepsy but was offered little by adult services after schooling and certainly nothing he wanted. His distress and challenging behaviour led to a segregated placement where a highly intensively staffed unit ignored mum’s warnings about seizures and he died in the bath unobserved. Segregation in education is increasing from 23.1 per cent in 2008/9 to 27.8 per cent in 2012/13, boding ill for inclusion and visibility.
Hostile community
Francesca Hardwick lived for 18 years with her mum Fiona Pilkington in the community but continuous abuse by youths was ignored by the police rendering her effectively absent from her community who were hostile or not interested. In despair, her mother killed both herself and Francesca.
As criteria tighten in health and social care, more and more people are leading socially isolated lives, resulting in poor health resilience. Public Health 2013 estimated there were 1,068,000 adults and children in England with learning disabilities. They are more likely to be poor, bullied, abused, excluded and isolated and, as an adult, unemployed (only 7 per cent are employed), with poor health care. Public health needs to be pro-active in an enabling environment for healthy lives.
Reasonable adjustments
What is needed are reasonable adjustments in health and public health services, health checks and screening, making healthy options easier. There needs to be more work, better housing, hate crime to be tackled and healthcare to be more accessible; for example, by making adjustments for reading problems.
NHS England’s Sheffield project is looking at the slimming world to see how advice and guidance can include people with learning disabilities. Could materials be adapted so they can attend the same sessions? The biggest barriers to weight management are that services don’t support it.
www.ihal.org.uk@ihal.talk
Martin Cattermole, personal health budgets advisor NHS England, talked about NHS personal budgets pilots and the different uses they made of resources. For example, young people with complex needs aren’t stuck in inappropriate long-stay hospitals.
Peter was diagnosed at two years old with autism and at four years with complex diabetes needing four-hourly blood tests. By the age of 19, his behaviour had become very challenging – he stopped eating and drinking or allowing injections. The transitions team developed a care plan with Peter choosing his own personal assistants. They worked with his family and people who knew him well during transition to devise a plan built round his interests and how he wanted to be supported, including at college.
Nottingham Adult Social Care co-ordinated education, social care and health so Peter’s family only had to deal with one person. Plans were signed off by a competent professional; different roles, supported by accredited training, included managing risks. The number of people coming into the family home was kept to a minimum which improved mum’s quality of life.
The old Peter re-emerged showing that organising things differently with well-trained people made the difference.
“The most valuable but under-used resource in health and social care today are the people who use our services”. This quotation by Dr Lucien Engelen (Director REshape Center for Innovation at Radboud University Medical Center) was used by Mick O’Gorman of SPARC to introduce his talk.
SPARC supports 270 members with moderate learning disabilities to develop their latent skills to help each other. Not on official registers, out of range of the welfare state, they are the silent majority who turn up in prisons or the health sevice. Many have been bullied and not had the chance to learn skills, such as how to get a GP, avoid type 2 diabetes, get a health check. Diabetes costs £600 million a year, obesity £4 billion. Some 25 per cent of offenders in prison have IQs of less than 70 and each prison place costs £40,000 a year.
SPARC’s Real Comics project (see Inspiring Projects and Innovative Practice, Community Living, 26, 4) developed by and with young people is a new approach to health literacy for people with limited reading skills and communication needs.
One thousand copies of SPARC’s comic story on health checks, distributed to people on GP registers via their surgeries, has started to bump up the numbers. With Halton CCG’s help, it has moved from print to digital with six comics and films now developed. Most public information is written but the average reading age of SPARC members is 9-11 and 8 milllion people are functionally illiterate, unable to read or fill out a form. The animated comic in digital format reduces costs and increases access as it can be downloaded onto smart phones which can voice-read.
Non-patronising
The people themselves capture and portray issues in non-patronising easy-to-read ways. One film showed how a lack of response to Wayne’s symptoms led to him being in hospital with diabetes, whilst Donna was shown being taken through the different stages of a health check. Another showed the problems of isolation with the risks of drinking, getting into the wrong company, lack of physical activity and with heightened anxiety ending up using emergency services. Hospital passports could be added as an information system and shared.
Multi-Me provides secure platforms for on-line networks, like facebook, where people can control access and record important things about their lives, its director Charlie Levinson explained. People can use its range of tools and media to tailor their person-centred plan as well as facilitate circles of support, while belonging to several networks.
The QR code system reads bar codes to play a specific video on multiple devices and can stream videos onto a phone. Will Britten, Director of Inclusive Media Solutions, described how the video goes through the process of making toast step by step and can also explain the contents of a leaflet, using handsigns, audio and video.
Trials with people with dementia showed it was easy to learn, just like scanning a bar code in a shop, taking people straight to the video required. By showing people how to do things it helped their independence.
What do we mean by ‘well-being’?
Feeling good, having influence and control, a sense of meaning, belonging and connecting with people and places and being able to manage a problem and change are well-being factors promoting improved recovery from illness, fewer limitations in daily living, higher educational attainment, greater productivity,
wages, better relationships, more social engagement.
(1) http://www.sgul.ac.uk/media/latest-news/patients-with-learning-disabilities-become-2018invisible2019-in-hospitals-says-study
