It's time to start asking and answering the hard questions: a view from an expert by experience

Dominic Stenning is a member of the experts by experience group for the Commission on the Future of Health and Social Care in England. He spoke at the launch of the interim report, giving a frank and compelling patient perspective on the health, mental health and social care systems. You can read about his experience below.

My late father was a GP and my mother, who is a retired nurse, worked as a ward sister at Great Ormond Street Children’s Hospital. Although I grew up in a medical setting, living above my dad’s GP surgery in the Fens, that didn’t give me immunity to ill health, (even though I had my own personal doctor and nurse on hand!).

I have accessed mental health services from a young age and after my father's death in January 1998 I became addicted to heroin for almost a decade as a way of coping with my loss and continuing mental illness. Through much determination I became drug free in August 2007 and went on to peer-mentor others by working with a local drugs charity.

However, in December 2008 I was involved in a car crash, causing me a lumber spine injury and mobility problems. I was housebound for 3 years and rapidly gained weight to 33 stone. As you can imagine life was extremely miserable – all of my hard work seemed lost and I felt extremely sorry for myself.

Eventually, after years of pleading, I qualified for a full gastric bypass that saved my life. I have now lost 12 stone and saved the NHS a lot of money in long-term care. But, this operation only came about when I was diagnosed with sleep apnoea. My experience highlights the complications of limiting entitlement; without sleep apnoea I would not have qualified for my operation. It raises the question: what would the benefits have been – to me and the NHS budget – had I been allowed to have the operation earlier?

Looking at savings in the short-term only can cost the NHS more in the long term and, without this operation, my long-term care and associated health issues would have continued to cost the NHS much more.

My mental health didn’t seem to come into consideration (apart from the initial assessment), with the focus placed on my physical health. I was discharged from mental health services just six months before my operation, even though they knew it was planned. Since having the operation I’ve struggled with my mental health, but I’m one of the lucky ones who can just about fund a private therapist.

If we want to save money then we must put more of it into mental health and focus on overall wellbeing and prevention.

My mental health has had an impact on my physical health over the years and was the biggest underlying cause of my extreme weight gain. In fact, when I finally found out that I had qualified for the operation, I lost four stone before the operation because I felt I had another chance at life.

In my experience, and this is shared by others in the experts by experience group, physical health care, mental health care and social care are not joined up. If you have a mental health condition, as many people with a long-term physical condition do, it only exacerbates your situation. I’ve heard of  experiences where the mental health team and the social care team were fighting over which 'pot' the money for care comes from. Surely this must change?

As patients and carers we don’t care which pot the money comes from; we just want our needs met without being pigeon-holed into physical health, social care or mental health boxes. We want a seamless service that sees us as one human being with multiple needs not separate, isolated needs.

I understand that one funding stream is not the only answer, but it is an important step in the right direction if we truly want a seamless service that meets our multiple needs.

I also understand that with an ageing population that’s growing exponentially, and with the current austerity measures, that the money has to come from somewhere.

However, not everything can be covered by productivity savings from an integrated service. As a country we must take our collective heads out of the sand and start making some hard decisions. We also need to inform the wider public who still think social care is free at the point of use. Only then can we start making the real changes that need to happen.

I hope the commission's interim report starts this debate and gets us all asking, and answering, the hard questions that the report raises. I'm extremely proud to be working with the commission and The King's Fund. The commissioners have done a great job canvassing opinion in stakeholder events around the country and through social media.

The expert by experience group has been a small step, but a giant leap for patient and public involvement. I’ve been humbled to be a part of this group of 10 experts and know we have all had an impact on the thinking of the commission, influencing the report by putting real lives and experiences on the table. With a report like this, which focuses heavily on economics and structures, it’s very easy to forget about the real lives that will be affected by the ideas suggested.

However, that's just a small part of what the group has achieved so far. Not only have we reminded the commission of what it's like to be on the receiving end of a system that is far from joined up, we have gone on to give our thoughts on the interim report and challenge the commissioners on how any proposed changes will affect patients and carers. We've even tried to come up with our own solutions as we know that's the hardest part!

As important as this report is, I'm aware that, as the first expert by experience group working with the commission and The King's Fund, we are treading new ground and laying the foundation for others to build upon. This whole process has been extremely challenging and although it's not perfect, we have made significant progress towards co-producing the report and this must not be overlooked.

The King's Fund has set the bar high with a new standard for others to follow. I really hope that we've shown just how much a group like ours can achieve working on such complex and ambitious ideas to make an NHS that is truly joined up and fit for the 21st century.

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Comments

#41987 Alison J Bourne
Innovator in Mental Health
CBRT

Excellent and really valid comments, thank you Dominic.

#41991 ROBERT MATTHIAS
Mental Health nurse
NHS Wales UK

As they say healthy body ,healthy mind. Sadly throughout society short term vision /action seems to be the norm . Those who are in control often go for the popular, easier option then leave it to others to clear up the mess. In management we called this the seagull management approach. They fly in make a mess then fly out again. Everyone knows prevention is always better than the cure but we seem to wait for the rot to set in before we do anything positive. Dominic is the kind of guy we need in charge of the things that matter because he has the courage to achieve change

#42089 Adrian Stott
various mental health roles

Hi Dominic - thanks for this - like you I am very keen on prevention of mental illness; massive saving of suffering and massive economic benefit - what interventions would have helped prevent your illness? (e.g. pre-emptive CBT? e.g. online Moodgym?) Many thanks

#42168 Dominic Stenning

Thanks Alison & Robert for your kind words. Thanks for the question Adrian, I think using chat forums have been useful & I know others who have written blogs about their experiences & found the whole process very rewarding. I think using a secure service similar to Skype could enable group therapy and a way of connecting people. However using sites like meetup.com could be used as a tool for social inclusion in order to maintain face to face. My point is finding a balance as tech doesn't have all the answers but is a great tool that isn't used enough. Mind have made a real success of Elle Friends which is a supportive forum for people to encourage each other in a relatively safe environment. I've found twitter has been an invaluable tool to me & have found it to be a very supportive resource. I think these are all tools that could be used to great effect but it means providing basic IT training in order to ensure many with MH illness don't become even more socially isolated through "digital exclusion". Hope that gave you answer & if you're on twitter find me at @Patient_Leader :)

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