Long term conditions are coming in from the cold

Long term conditions are coming in from the cold. We’ve known for many years now that they were the future of health – but mostly we talked about possible solutions and theorised about the size of their impact, and just carried on treating individual conditions as best we could.

The problem grew and grew, until we find ourselves in the situation we do today: in which the affordability of our healthcare system is in jeopardy.

Then something changed. We found out that long term conditions can’t be treated in the same way as the communicable and deadly diseases upon which the basis of modern medicine was founded.

The light-bulb moment came when we realised that people were no longer trying to avoid an unpleasant death; patients were now focussed on trying to avoid an unpleasant life. With the rediscovery of William Osler’s maxim to treat patients rather than diseases, came an understanding of the connection between long term conditions and quality of life.

What we need to do for our patients has to revolve around helping them achieve the outcomes that are important to them. Previously we’d been focussed on helping patients achieve the best test results; now we needed to focus on helping them achieve the best quality of life.

Attention naturally switched to how to turn these lofty ideas into practical everyday care. New ways of thinking like Ed Wagner’s Chronic Care Model showed us this requires a partnership between professionals and patients in which the community is as important as the healthcare system.

Integrated, preventative care which spans these various settings became the holy grail. But, at least in the UK, it eluded us. We jealously looked across the Atlantic at organisations like Kaiser Permanente and the Veteran’s Administration, who were achieving great outcomes and patient satisfaction by delivering ‘whole system care’. We contented ourselves that these organisations only reached a small proportion of the US population; in any case, we thought, ‘our NHS’ was different.

But then we stopped theorising and instead just started doing integrated care. Great local initiatives started to spread; Torbay, Greenwich and North Lincolnshire were suddenly on the map. In Gwent, hospital admissions dropped significantly as it integrated health and social care.

The Year of Care Programme showed that improved outcomes could be delivered at a system-wide level and this care provides value for money and a great patient experience.

The Integration Pioneers will be announced in November and will be given logistical and financial support to do integrated care.

Suddenly, we’re not short of our own solutions, but ‘person-centred coordinated care’ (which is what patients wish to experience) is still a rather frail flower.

NHS England and UCLPartners are jointly holding a conference  – The Future of Health Conference  to be staged in London on October 3 and 4 – which is designed to keep up the momentum in ‘doing’ integrated care. We’re past the point of theorising now; we know the massive challenge of long term conditions.

We’ve also got some great solutions to this challenge. We need to bring people together to share great practice, and also learn what doesn’t work. We’re trying to do something different with ‘The Future of Health’: how to turn today’s exceptional practice into tomorrow’s normal practice.

Everybody in health and social care has a role in doing this. We’re excited to be involved at this turning point, and we hope you’ll join us.

Ed Mitchell

Ed Mitchell is a junior doctor training in psychiatry, and currently one of Sir Bruce Keogh’s clinical fellows, working in Domain 2 (Enhancing the quality of life for people with long term conditions). He has a particular interest in integrating physical and mental health. Before studying medicine on the graduate entry course at Oxford, he was a Fulbright fellow at Harvard University and a junior research fellow at Pembroke College, Oxford.


  1. Pearl Baker says:

    I have left a very long comment before, probably that was why it was not published on this comment page. Here we go again;

    I am a non recognised carer, but have continued to support GPs in their ‘hour of need’ who are the names of the ‘care team’ and how do I contact them! I have been trying to find this out for over twenty seven years, we muddle on as non recognised carers. Informing the powers that be when he is unwell, ignored until it is nearly too late.

    Caldicott information governance review: will be the final nail in the coffin for the severely mentally ill and their non recognised carers.

    ‘Everyone will feel confident that information about the health and care is secure, protected and shared appropriately when that is in their interest’

    GPs will feel restricted in using their common sense in speaking to recognised non carers.

    I am afraid it is down hill all the way for the severely mentally ill and their non recognised carers.

    Lessons can be learnt from Professional educated carers.

  2. Margaret Coles says:

    Back in 2008 I saw that Information Technology was the way forward for patient self-management of Long Term Conditions and on my retirement from the NHS as a Community Physiotherapist, I put all my knowledge and skills into my website, MovingTherapy. It is now widely recognised and accessed on a daily basis. It is linked to NHSinform of Scotland, Cambridgeshire County Council ‘Your health, your Life’ and the Department of Health Long Term Conditions website.
    May I add that in 2005 I worked in the first Integrated Health and Social services team in Cambridge. Because we were based in the same room it was a resounding success but for staffing and financial reasons this is no longer the case.

  3. Robert Donkin says:

    Absolutely agree. I was a Board Member of the Royal Berkshire NHS FT for 6 years as well as having a long-term condition – type 1 diabetes. At Board meetings the acute and A&E Clinical Directors got a good hearing when funding was being allocated but I can’t recall a Board meeting where long-term conditions were seriously discussed. Clinical Consultants covering long-term conditions were perceived as lower down the consultant hierarchy and the Board felt that an acute hospital may not be the place for managing long-term conditions and that an integrated community setting would be better for the patients. Change comes slowly in the NHS!

  4. Claire Bennett says:

    Fantastic blog, thank you for voicing what I feel as a family member of a mum newly diagnosed with Parkinsons and through the loss of my dad to a stroke.

    It is true that we are not just an ageing population, some are not ageing well at all. Both of my parents were quite young (in 50’s/60’s) when struck down with neuro issues and as we know many are younger with LTC. It is my view that solutions are needed to educate and inspire holistic care for people with LTC and to not place sole importance on this needing to come from the GP alone.

    These are groups of people “inappropriate for acute care” through A&E, often referred on for more appropriate care in the community that is non existent. These are health practitioners who have often never cared for anyone with a LTC before and are not fully prepared to care for those with LTC experiencing specific medication needs/common health complications like UTI and other symptoms that a healthly person would experience.

    Trying to put together the jigsaw puzzle of what is the Parkinson’s and what is a normal cold/UTI is a constant challenge. Or in my mums case an actual worn out knee through normal ageing and wear and tear which went untreated under the umbrella of PD.

    Good luck for the conference, if I still lived in London I would certainly be there.



    (a concerned daughter and manager of a charity in Edinburgh helping those who can no longer manage their gardens to get help through garden sharing and until recently a manager providing activities and a quality of life for those within long term care):

  5. Margaret Millar says:

    Alpha 1 Antitrypsin ATT Deficiency is a very long term metabolic condition we have from birth, it was discovered in 1966 and therapy has been used successfully in the USA for the last 25 years. We are stuck in a never ending cycle of therapy denial because NICE have a “do not do” recommendation on ATT augmentation therapy therefore the Named Patient Bases has never worked for any A1AD patient in 50 years. The pharma company’s play cat and mouse one pulls out and another comes in with no EU license to supply therapy, so research & development can continue. Who in the NHS is willing to sort our predicament until England NHS takes the side of cherry picked patients and help them directly we are doomed.

  6. K. Atherton says:

    What doesn’t work is literature referring to those with chronic disease “a burden on society” nor doctor’s or nurses excluding them from crucial information, treatments or services relevent to better management of their disease on diagnosis as oposed to later stages. Informing the general public that such disease exsist, testing for genetic forms before symptoms show and how to avoid risks of exacerbation from ALL known causes in the case of copd would be a good start. I don’t feel anyone wants a “unpleasant death” and I imagine everyone would like the opportunity to have some quality of life with treatments and services proven to help with that. These are people with feelings not statistics, we have names and are not just numbers to include in repeated studies.

  7. Kay Anderson says:

    Being a long term sufferer here in the Uk with a disease known to your profession as A1AD I have to take objection to you rewarding yourselves. I have been denied a therapy that could and would slow my progressive disorder down, I have been passed from pillar to post within the surgery level and I have been denied oxygen therapy by a qualified copd nurse! all within the last 7 years of suffering. It is nothing for a alpha one patient to be misunderstood consistently and frustration is a word we can spell backwards. Not only are we under recognised we are under valued and failed within the NHS system …sorry if I can’t collaborate with your new initiatives but until a sick person here actually gets help and more better treatments offered to them this is frankly a farce! Get back to grass routes and learn by your mistakes and reward yourselves once your long suffering patients needs are addressed…..very disillusioned alpha one antitrypsin sufferer here in the South West. I would say the theorising has gone on far to long and what is needed most is a balanced approach to those of us whom many of you simply do not recognise and worse fail to respect …

  8. alison hothersall says:

    very valid point . Its long winded for a speaker but do describe people with long term conditions as people or population and less often as patients . Its wrong but the common perception is that patients have things done to them and we want people living with long term conditions to work with their health care provider on working out the best way to stay as healthy as possible whilst coping with diabetes , COPD , MS etc etc
    and yes I am one of those people

  9. billy says:

    Your conference looks like another pointless “professional-centred” backrubbing get-together where you patronise patients about knowing best about “what they need”. Where are the patients in the conference?

    And why is McKinsey sponsoring it?

    • NHS England says:

      Thanks for your comment. Agree that patients should be centre-stage, and indeed they quite literally are: patients will be opening and closing the conference, and we have a ‘patient jury’ on the panel at all sessions. Patient organisations including National Voices and the Richmond Group of charities have been extremely helpful in assisting us with designing this event. Conferences like this cost a lot of money to run: industry sponsorship helps us to run the conference at no cost to the taxpayer. We hope you’ll join us.

  10. Lynne Craven says:

    Sometimes I am a patient…but mostly I’m a person living with MS. Self-management means I have a good life. Don’t forget to mention it at the conference!