Change that leads to better lives

‘Mike would have died if it hadn’t been for you!’

It always feels slightly dramatic and over the top when people say this yet with no sense of self-aggrandisement – it is probably true. At 47 my son’s multiple and complex health needs are finally well managed and supported. His life is busy, seven days a week, packed with work, dancing, sport and friendship. Roll back the years however and this was not the case so the transformation is remarkable.

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However, along the way there was a lot of trauma and distress for him (and us), which could have so easily been avoided. Evidence from the Premature Mortality Review, more recently Leder, and some well-publicised unnecessary deaths, demonstrate that there are still too many people with learning disabilities not getting the right person centred care and support across health and social care, with disastrous consequences.

I want to share one or two observations as part of an on going quest for solutions.

The lack of prevention and early intervention: Social care has such an important role in promoting health and wellbeing yet looking back, the support provider played lip service to crucial things like lifestyle and diet, hiding behind the mantra of ‘choice’ rather than actively promoting ‘informed choice’. No one listened to me about risk and I felt like I was banging my head against a brick wall! It was only when my son developed some serious health issues that people began to take it seriously and listen. Today an integral part of his support is around making shopping, menu planning and cooking fun. It’s so much easier to exercise if you have less weight to carry and you feel well!!

Seeing the person not the disability. It took a really long time for people to recognise that some of the things Mike was experiencing- lethargy, lack of motivation and incontinence- were not an aspect of his learning disability. It took me over two years to get a diagnosis of ulcerative colitis and all the way through the support provider was poo-pooing the idea that anything was wrong – if you’ll excuse the pun! His incontinence was deemed to be ‘behavioural’ and they wanted to refer him to a psychologist! But I was convinced that there was something physical going on and had to really push the GP for a referral to a gastroenterologist.

Getting a diagnosis helped. Our hospital experience was excellent. The consultant listened and took the issues seriously. The radiology department, on my request, made the reasonable adjustments they needed to when undertaking the very intrusive tests needed to confirm a diagnosis of ulcerative colitis before treatment could commence. More importantly the support providers now had to take the issues seriously. This included introducing a gluten free diet and recognising I wasn’t being an over cautious mum by taking on the health coordinating role, liaising and building up good relationships with medical practitioners. Regular monitoring over time also alerted us all to an even more serious and rare life- threatening liver condition.

I think we have to acknowledge that the surgical team that removed half of Mike’s liver are technically the ones who really saved his life, but they acknowledge how much they learnt from working with Mike. They had never performed this operation on a person with learning disabilities but they were keen to learn; about decision making and capacity; planning ahead, preparing Mike, making reasonable adjustments, valuing our contribution to his care in hospital and arranging a single room so we could be with him 24 hours and work as part of the team. The experience was exemplary and I have since worked with other families to share some of my knowledge around the law and what good practice should look like and where to get support if they are not experiencing it.

Mike was lucky! He had a mum that was informed and prepared to persevere even when people were rude and unhelpful. It can be tough to push through the wall of professional hubris but we were also fortunate because we met some great professionals who were prepared to listen, take things seriously, learn and work together with us to save Mike’s life! Others have not been as fortunate as us. Many families are fighting to get good health care for their loved one and despite their best efforts things still go wrong! One of my oldest and closest friends lost her learning disabled brother last year. The Serious Investigation Report called it ‘an adverse incident’. Such bland language obscured the fact that he died as a direct consequence of a series of catastrophic blunders, a result of a number of people just not doing their jobs properly in the hospital and the community! The system got the blame but in the end no one person was held accountable. This is just not acceptable!

We have to find a way of equipping families and people with learning disabilities to expect more from a system and the people who are paid to work in it, that is there to serve them; to know about their rights in law and understand how things work. Staff that work in services need better support to work effectively and sympathetically with people with learning disabilities, including understanding the sorts of reasonable adjustments that need to be made, and how beneficial it can be to work in partnership with families. Better health begins closer to home and in the community. The evidence is clear; many health- related risks are related to lifestyle and focusing attention on the quality of people with learning disabilities everyday lives is crucial in the battle to end premature mortality.

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