Wednesday, 18 September 2013

Long Term Conditions

I am a passionate advocate for meaningful patient involvement in all aspects of health care.
With conferences as the melting pot of new ideas, it seems only right that contributions from patients themselves are added as essential ingredients into the melting pot. I have commented on this after attending most conferences - where were the patients?
One new idea for involving patients in conferences is being tested at the NHS England/UCL Partners Future of Health conference in October. A Patient Jury, a panel of patients and carers, will provide comment and feedback on the presentations and workshops through the two days. I am excited to have been asked to be part of the Jury and am hopeful that it is going to provide a model for patients and carers to be integrated into the discussions at conferences. I will be posting a follow-up blog on my experience of being on the Patient Jury - to pass my final verdict!

Testing this new format out at a conference about long term health conditions seems particularly apt. For me, long term condition management is where the medical model can't stand alone, and patient engagement can make the biggest difference at both an individual and collective level.

As a patient, I still need my medications and MRI scans, but I need to also manage the psychological and social implications of my long term physical health conditions. Through this, I have become an expert by experience. Working in partnership with my healthcare professionals, we should be able to decide upon the best care, based on a holistic approach beyond the straight medical model, incorporating the full scope of the biopsychosocial model, a model which allows us to make valid contributions to the decision making process.

At a collective level, self-management services need to be designed appropriately and healthcare professionals trained to support patients to self-manage. I strongly believe that can be achieved more effectively if patients work meaningfully as equals with professionals and commissioners on how those services are developed and how professionals are trained. I look forward to hearing people's ideas and experiences around this at the conference and hope it will lead to the practical implementation of some of these concepts.

Empowerment to self-manage for me (and many people I know) has come out of desperation and as a last-resort - something we have stumbled upon by sheer luck while we were lost in the system. Instead, people should be empowered to manage their conditions because that is how the system and care pathways are intrinsically designed, with patients. This new approach is important as I believe it is the only way to not only sustainably manage long term conditions, but to give patients a quality of life and clinicians a framework in which they can work positively with such patients.

With long term conditions as the current challenge in the NHS, it seems only appropriate that patients are in the mix to discuss the possible solutions at the Future of Health conference. I hope the day will demonstrate how patients can be involved in conference discussions as well as the design and implementation of solutions to help manage long term health conditions, leading by example on meaningful patient-professional partnerships.

See you on the 3rd & 4th October!

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  1. Excellent blog, as always Anya. delighted to hear that you are on the 'jury' at such an important conference - what a great idea!

    One of the key phrases that stood out for me was "Empowerment to self-manage for me (and many people I know) has come out of desperation and as a last-resort - something we have stumbled upon by sheer luck while we were lost in the system. " This has to change! Keep doing what you are doing and it will :)

    1. Thank you very much Gill for your kind words! I will be blogging about my experience of being on the jury.

  2. Thanks for summing up Anya...the time seems to be right or even ripe for change! Let's make the change right for us and all the other patients/carers/people out there!

  3. Thanks for the blog

    There are 4.5 million treatment for acupuncture every year - mostly outside the NHS. Acupuncture has an excellent evidence base - including pain control, Musculoskeletal pain and headache.

    I hope as part of your Jury presentation you can bring in how patient choice is important for therapies such as acupuncture, that are patient centred, and give patients time to support improvement in their health - particularly important for those with long term health conditions.

    You asked for people's ideas and experiences around this and I hope you can mention this at the conference.

    Nick Pahl
    British Acupuncture Council

  4. Hi Anya, great blog and I should've read it last night but this is my first long haul trip from Peterborough! Today is the conference & "The Patient Jury" is certainly a step in the right direction! I wish you all the best as this first step must succeed if we're to take the next, so you have my full support! Looking forward to meeting up today! I think Acupuncture comes under patient choice or Patient Centred Care. I think if you want alternative therapies then you should but only instead of something else, otherwise it's not a choice? I'm all for patients deciding/involved in their own care. Best of wises Dom

  5. Thank you for this important information Anya. You have a lot more knowledge than I could ever bring to it.

    Check this out too:
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