Children who are ‘too complex for the system’ – the All Party Parliamentary Group on children with a learning disability and challenging behaviour

I went to this joint meeting of the All Party Parliamentary Groups on Learning Disability and Children on Monday. For those who have never been to an APPG, they are rather odd occasions. It is never clear who has been invited, and why, and who is in the room, unless you see faces you recognise.

This APPG was chaired by Mark Harper, MP for the Forest of Dean. I found nothing on his website to indicate how he has come to chair the APPG or why he is interested in Learning Disability. He did not explain but was a competent and empathetic chair, the meeting was well run.

It was a meeting of 2 halves. On one side, the great and the good, debating the challenges of treating these young people with compassion and dignity, in a way that supports rather than undermines them and their families. This is where the quotation of the day came – ‘Children who are too complex for the system’. More facts, distressing facts. Despite Transforming Care the numbers of children being detained is increasing (we think – data is flaky). £500 million a year to keep a small number of children in institutions. Lots of money  being spent on the wrong solution. Clinicians feeling powerless – one, a nurse, wept as she told her story of failure. Families encounter a system wall. Education, health, social care pass the buck, not our problem, not ours, not ours. No one talks about reform, we are lost in medicalisation, the default is inaction, no one takes the lead. MPs can help, bang heads together. But no system that relies on MPs having the time, know how and inclination is worthy of the name.

And then, unforgettably there were the families, bravely telling their stories. It’s not the first time I have heard them. It is not the first time they have been told. The stories cut through the crap. Each retelling brings tears and anger, frustration and indignation. But how many more times do they need to be told?

John’s son aged 13, has an autism diagnosis, and behaviours that challenged his school (though not his family). He was spending what John thought was his last weekend at his home before going off to residential school. Then John received a phone call. ‘Don’t bother, he won’t be going away to school. We’ve sectioned him. Don’t care what the law says, it is done’. No hospital or ATU place could be found. He was returned to the care of his family, still sectioned. Covered in bruises. Police said, ‘your son’s non verbal, cannot do anything about it’.

The Local Authority cancelled the boarding school place, without consultation. No education was provided whilst he lived at home, despite the law, and despite requests from John. Finally, no thanks to the Local Authority, the original school place was reinstated. He is there now, we are told he is thriving.

Then Leo. Leo’s son, Stephen has spent 5 years locked in a secure unit. He is on 8 anti-psychotic medicines daily. He has been injured. No action has been taken. There was a plan to release him, a place was found, builders started work. Then the Responsible Clinician changed his mind. The CCG stopped paying the builders. He no longer has a release date.

The law is not defending disabled people. We heard this message again and again. Not defending their rights to care, support, dignity, but also not defending their safety, failing to challenge criminal behaviour. If it were racially motivated or homophobic, action would be taken. But disabled people, it seems, do not count, do not matter.

Is there a solution? We know what the solutions are, have known for years and years. Support families, before they scream for help. Be there, be ready to help, be flexible. Recognise that when you put someone in a distressing situation, you will get a distressed reaction. Institutions are the problem, not the solution. The problem is getting people to remember that, to act on it.

How to make it happen? The APPG felt helpless and hopeless. The law is there, but not being implemented. The Human Rights Act, and the UN Convention are ignored. Leadership is lacking at both local and national level. No one owns the problem. Perverse incentives operate – all the time the NHS pays, Local Authorities don’t have to. And the NHS pays for institutional ‘care’.

Letters will be written from the APPG to the relevant ministers. Answers will be sought. In the meantime, those children are still being locked up, knocked about, dehumanised. For how much longer?

Jan Walmsley

Life stories in East Kent

by Jan Walmsley

More than 20 people with learning disabilities and their supporters came to learn about recording their life stories at Canterbury Christ Church University’s Broadstairs Campus on a wonderfully sunny day in March. The workshop was led by Jan Walmsley and Sue Ledger, members of the Open University’s Social History of Learning Disabilities Research Group.

People came from all over East Kent, from Folkestone to Canterbury, Dover to Margate. On arrival, everyone looked at examples of life stories by people with learning disabilities, going back as far as Joey Deacon’s back in the 1970s. And met Joyce Marsh, who, with the help of Mencap volunteer Linda Smith, actually published her life story in 2015. It was inspiring to everyone to meet someone who had actually done it.

We then viewed a film, No Longer Shut Up, which tells the life story of the late Mabel Cooper. Mabel was taken into Children’s Homes, and later into a huge institution in Surrey called St Lawrence’s. After she left St Lawrence’s she campaigned for the rights of people with learning disabilities, and told her life story wherever she could so that people are ‘No Longer Shut Up’. No one in the audience had lived in a long stay hospital, thankfully, but most people could relate to Mabel’s story – being moved around, being bullied, not having a say in your life, these experiences were shared by many of the people who came.

We then got around to discussing how many people wanted to tell their stories. Everyone did. Lots of people shared bits of their lives to explain why it was important that their stories are recorded.

After an excellent lunch we thought about the practicalities, how people actually tell their stories. Joyce and Linda explained that they had had lots of conversations which Linda had written down. That is how they made their book. We watched videos of interviews, and thought about what makes a good interview. Everyone then practised asking and responding to questions. Some people were quite brilliant at doing this.

We talked about ethics – making sure people know what they are agreeing to; rules about using photos which show people; and thinking about other people whose stories are part of our own lives. Do they have a say in what people record?

Finally, we got around to discussing what to do next. Make a book of people’s lives like Joyce Marsh? Other people liked the idea of making a film about the lives of people with learning disabilities in East Kent. Everyone agreed that these life stories need to be on a website and that professionals need to know about people’s past, as well as their present, and to learn what makes for a good life – and how they can help.

East Kent Mencap, East Kent NHS Hospitals Trust and Canterbury Christ Church University, who sponsored the workshop, are now discussing how to raise money to make the dream of recording the lives of people with learning disabilities in East Kent a reality.

a picture of someone holding up an A3 piece of paper on which are written ideas for a film

Ideas for a film about the lives of people with disabilities in East Kent

PHE Conference – using primary care data to plan better services for people with learning disabilities

By Lorna Rouse

On the 15th March Public Health England held a conference on using primary care data to plan better services for people with learning disabilities. Having identified GP registers as a potential source of key information on the health of people with learning disabilities, the Learning Disability Health Observatory at Public Health England have been working with the NHS Information Centre to extract anonymised data from general practice records to explore the health profiles of people with learning disabilities in local areas. The conference introduced this data, presented some preliminary findings and considered how this new data might be used to improve experiences of health and wellbeing for people with learning disabilities. (Further details can be found at https://www.phe-events.org.uk/HPA/media/uploaded/EVHPA/event_553/PHE_Learning_Disabilities_Conference_2016_slides.pdf)

Setting the scene

Professor Eric Emerson (University of Sydney and Centre for Disability Research, Lancaster University) put the new data in context with a brief history of some key events that have highlighted the inequalities in healthcare experienced by people with learning disabilities and some resultant initiatives aimed at improving this situation. Despite signs of progress, better understanding is needed of how and why the health and health care of people vary between different parts of England.

The new data

Gyles Glover (Co-Director of the Learning Disability Observatory, Public Health England) introduced the new data with some words of caution. In particular, that the data tells us what has been recorded in practice notes and there are likely to be inaccuracies and peculiarities in the ways that individual practices record some conditions for patients with learning disabilities. Additionally, the data do not cover all practices since some did not respond and one maker of licensed information systems asked an ‘unrealistic’ fee for their cooperation, so practices using this system (including some known to have high rates of patients with learning disabilities) could not be included.

A comparison was presented of records for people with and without learning disabilities for a range of conditions, concluding that many major health conditions are more commonly reported or reported at younger ages for people with learning disabilities.

The case of diabetes

Since my PhD project explores the experience of diabetes care appointments for people with learning disabilities, I was keen to hear about the data on diabetes. In agreement with the limited existing research (e.g. Anwar, Walker, & Frier, 1998; Shireman, Reichard, Nazir, Backes, & Greiner, 2010; Taggart, Coates, & Truesdale-Kennedy, 2012), these new data show higher frequency of reported diabetes in patients with learning disabilities (and at younger ages) than in patients without learning disabilities. Diagnosis frequency of both type 1[1] and non-type 1 diabetes[2] was almost double for people with learning disabilities. In an average 250k population there are:

  • 8.6 people with learning disabilities and type 1 diabetes
  • 81.6 people with learning disabilities and non-type 1 diabetes
  • 1.9 times the frequency of diabetes in people without learning disabilities (Glover, 2016).

Encouragingly, and in contrast to some existing literature, which suggests inequalities in diabetes care (Taggart et al., 2012), the new data indicated similar management of diabetes for people with and without learning disabilities. This is based on records of a commonly used quality indicator for diabetes management, the testing of HbA1c levels[3].

  • 87.4 people with learning disabilities and 91.3% of people without learning disabilities had a recorded up-to-date HbA1c test
  • 81.9% of people with learning disabilities and 85.7% of people without learning disabilities were recorded as having a ‘satisfactory’ HbA1c level (Glover, 2016).

I will be interested to see whether further details of quality of care indicators for diabetes become available from this data.

Improving healthcare – Looking After Me and My Diabetes

During my literature review I have been looking for examples of reasonable adjustments to diabetes care services for adults with learning disabilities, so in the workshop sessions I was especially interested to hear about a diabetes education programme designed for people with learning disabilities and their carers. Nicola Winch, Diabetes Specialist Nurse and Sophie Treagus, Diabetes Specialist Dietician from Northamptonshire Diabetes Multidisciplinary Team described the Looking After Me and My Diabetes course set up for people with learning disabilities who may be unable to access standard structured education programmes for diabetes such as DESMOND[4]. Key features include:

  • two hour sessions each week for four weeks
  • continuity of day, time and venue for each 4 week course
  • attended by 6/8 people (a minimum of 4)
  • aimed at people with learning disabilities and their carers (paid or family)
  • open to people with type 1 and type 2 diabetes, with a new or longstanding diagnosis
  • handout detailing what is expected of carers before, during and after the course
  • carer action plans (to be shared if the individual is supported by multiple carers)
  • refreshers for previous attendees (particularly useful if carers have changed)
  • topics covered include: how the body usually works and what goes wrong in diabetes, understanding fat and sugar content of foods, managing medications, annual reviews and health checks
  • games and interactive sessions adapted from standard education programmes to make them accessible to people with learning disabilities
  • accessible food and activity diaries and pictorial action plans.

People with learning disabilities and their carers have told Nicola and Sophie that they have greatly benefited from the course and they feel that the course provides a safe environment to share experiences and ask questions. (Further details are given on the IHaL Reasonable Adjustments database http://www.improvinghealthandlives.org.uk/adjustments/index.php).

What the data means for people with learning disabilities – listening to experience

The conference nicely balanced presentations on the data with reflections on personal experiences and ideas for improving healthcare presented by people with learning disabilities.

The keynote address on access to healthcare by Crispin Hebron (Access to Health Care Lead at NHS England) and members of the self-advocacy group Gloucestershire Voices, considered what difference having better data might make to the real life health and wellbeing experiences of people with learning disabilities. Gloucestershire Voices concluded that the value of information alone is limited if it is not mixed with experience. This message was reinforced by members of Oxfordshire based self-advocacy group My Life My Choice who led an interactive session which helped to keep us all awake after lunch and provided a practical demonstration of the difficulties people with learning disabilities face when communicating about their health.

Equally illuminating for me were the views from delegates who were involved in the healthcare of people with learning disabilities in such a wide range of roles. Their experiences provided insights that would not be apparent from the data. Alongside the presentations given by people with learning disabilities this highlighted that despite the potential of the new data to improve the health of people with learning disabilities, understanding of where to direct change and how to ensure that change is meaningful for people with learning disabilities and their carers may be incomplete if the experiences of all concerned and their ideas for improvements are not heard.

Footnotes:

[1] In type 1 diabetes, the body no longer produces any insulin. This type of diabetes usually occurs before the age of 40 and often in childhood.

[2] When the body produces insufficient quantities of insulin or uses insulin inefficiently. This type of diabetes tends to occur later in life.

[3] A measurement of glycated haemoglobin which provides a picture of average blood sugars over the previous 8-12 weeks. This measurement is often used as an indicator of quality of diabetes management since it gives an idea of whether blood glucose levels are being controlled within recommended targets. Research into diabetes management for people with learning disabilities has sometimes taken absence of the recommended routine testing of HbA1c levels or results outside recommended targets as evidence that people with learning disabilities receive poor quality and unequal diabetes care.

[4] Diabetes Education and Self-Management for Ongoing & Newly Diagnosed is a structured education programme for those diagnosed with or at risk of developing type 2 diabetes.

References:

Anwar, A. J., Walker, J. D., & Frier, B. M. (1998). Type 1 diabetes mellitus and Down’s syndrome: prevalence, management and diabetic complications. Diabetic Medicine : A Journal of the British Diabetic Association, 15(2), 160–3. doi:10.1002/(SICI)1096-9136(199802)15:2<160::AID-DIA537>3.0.CO;2-J

Glover, G. (2016). Health and Care for People with Learning Disabilities. Presentation. Retrieved March 24, 2016, from https://www.phe-events.org.uk/HPA/media/uploaded/EVHPA/event_553/PHE_Learning_Disabilities_Conference_2016_slides.pdf

Shireman, T. I., Reichard, A., Nazir, N., Backes, J. M., & Greiner, K. A. (2010). Quality of diabetes care for adults with developmental disabilities. Disability and Health Journal, 3(3), 179–85. doi:10.1016/j.dhjo.2009.10.004

Taggart, L., Coates, V., & Truesdale-Kennedy, M. (2012). Management and quality indicators of diabetes mellitus in people with intellectual disabilities. Journal of Intellectual Disability Research : JIDR, 1–12. doi:10.1111/j.1365-2788.2012.01633.x

Contraceptive choices for women with learning disabilities

Contraceptive choices for women with learning disabilities is an Open University research project, supported by a grant from Open Society Foundations (Grant No: OR2014-12989). This inclusive project set out to explore women’s contraceptive decision-making and sought to include women with mild to moderate learning disabilities as well as women with high support needs. Between December 2014 and April 2015 we interviewed 19 women living in several locations across the United Kingdom. You can read the Final Report on our Social History of Learning Disability website.

Jan Walmsley