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.
- Find out more about the Commission on the Future of Health and Social Care in England
- Read the commission's interim report
- Catch up with the highlights from the interim report launch
- Watch Dominic deliver his speech at the launch of the interim report