A patient perspective: we can’t afford to be patient about involvement any longer

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As a person and a patient, I care deeply about involvement. I know it helps me as a patient to live more sustainably with my health conditions and I know that, in turn, can help the NHS to exist more sustainably too.

A report published today by The King’s Fund – People in control of their own health and care: the state of involvement – finds that, despite all the tools and knowledge being available to empower patients and give them greater control over their own health and care, we have not seen significant progress.

At first glance, the report may feel like we’ve been standing still for a decade when it comes to involving people. But what it really shows is the dedication and determination of those who ‘get it’ and who have been pushing this agenda in such challenging environments and cultures for years.

These are people who see this level of involvement as a way to empower individuals and communities to live well and have a healthy approach and attitude to their health. These are people who understand the secondary gains that this sort of involvement creates for the system.

The report highlights eight different areas that form the basis of a continuum of involvement that extends to the collective level and beyond.

Eight priorities to transform individual involvement in health and care

Eight priorities to transform individual involvement in health and care

These areas of involvement are the foundations of the person-centred health care system we hear so much about. They can help us turn the rhetoric into tangible experiences for people accessing services.

My experiences of living with long-term health conditions include being supported to self-manage by certain health care professionals, third sector organisations and peers. This support made the difference between being alive with my health conditions and living well with them. My parents are a vital part of that support – the occasions when they have been involved in my care have helped me a great deal.

I also know that I have benefited from service improvements, such as telephone consultations with my specialist nurse, that have been developed because of patient feedback. I hope that some of the feedback I’ve shared about my care can improve future patients’ experiences.

Some of my less positive experiences have made me aware of the practical and emotional difficulties that can arise if you are not involved in your own care. Getting involved at the collective level and working with inspiring patient leaders is a key part of the solution.

However, these eight areas of involvement are not a list of ‘either/ors’; they cannot be employed in isolation from each other and for that to be considered to have ticked the ‘involvement’ box. They are not single interventions. Collectively they represent a fundamental cultural shift.

The report acknowledges that despite progress, barriers still remain. Discussing these barriers is necessary, but not sufficient. The next step is action. I hope that you will read the report, and that it will make clear the importance of involvement at the individual level. Having established that, what is your goal to start making a difference?

Although I am a patient, it doesn’t mean that we can afford to be patient about the involvement agenda any longer.

Anya de Iongh is a patient leader and self-management coach. She tweets as @anyadei and usually blogs on the patient patient website.


Margaret Hughes

Volunteer Health Sector,
Comment date
05 November 2014
Patient Involvement goes a lot further than self management of ones own health conditions but until that is in fully embraced the rest is difficult. I too am a self manager, without the support of the health service which allows me to dip in and out as I see fit I would not be able to pursue my activities as a volunteer nationally, regionally and locally to influence policy and decision making at all levels where it makes a difference. Opportunities are out there but the training required for a patient to operate strategically is thin on the ground. I will be ecstatic when find that someone has devised a free and validated training programme for lay representatives. This would really help to shape the future and to raise confidence in a new NHS.

lorraine cleaver

Comment date
06 November 2014
I echo Margaret's comments. There is an adhoc approach to patient involvement in the NHS currently and a lot of the talk is hot air. Shared decision making and patient centered care is all very well until you are in my shoes. I cannot tolerate Levothyroxine, the one and only medicine offered or sanctioned for thyroid treatment. My thyroid was removed with the assurance all hormones would be artificially replaced. This has not happened. Instead I have been given one synthetic hormone, not the four or five my gland made. When I did establish, at great personal and financial cost, that the only medicine suitable for me was desiccated porcine thyroid glandular (previously the sole medicine for 100 years for thyroid dysfunction) I was refused it on the NHS. The guidelines that keep our doctors face to the computer screen are also responsible for keeping hundreds of thousands of patients ill. If you are serious about patient centered care and patient invovlement this massive issue must be addressed, and soon.


Managing Director and past NHS Trust Governor,
Lion Industries UK Ltd
Comment date
07 November 2014
I believe that a central problem of the NHS is poor communications in primary care, either slow between providers and GPs, but also difficult between GPs and their patients, which I feel is a significant impediment to patients being able to take control of their own health. If I want to contact my GP, I usually do not need to make an appointment, a brief conversation is enough; if I call to speak to the GP they are usually not available, so a call back is booked; when the GP calls me, I am aften not available, so we go back and forth with calls until one of us strikes lucky; what a wasteful system? It is as if GPs had not heard of emails, because email communications with their registered patients are not available at my practice. In the meantime I have to write a letter to my GP, which has to be scanned into the practice system and then takes up to 5 working days for a reply. Better communications between patients and their GPs would greatly improve patient involvement in their own health.

Simon Bradley

GP and Medical Director of Quality Practice Ltd,
Quality Practice Ltd and Concord Medical Centre
Comment date
08 November 2014
I agree easy communication with GPs for patients is essential for engagement and to enable supported self-care and as GP I know we have never needed our patients help more, if we are to care for them effectively. The phone is greatly under used as smart, mobile telecoms and computer telephone integration could easily put an end to patient doctor availability mismatch. Dialogue is often a much more effective healthcare interaction than asynchronous communications such as email but it clearly has its place to support patient care and email tools like GP Web from The Hurley Group. Central, in my opinion, to delivering the benefits of patient engagement is the patient’s own view and use of their own healthcare data and digital care plans that they can share with all those involved in their care. With falling funding of General Practice and soaring demand unless there is central resourcing of such infrastructure the aspirations and benefits of supported self-care will remain ad-hoc and available only in pockets.

Pearl Baker

Carer/Independent Mental Health Act and Advisor,
Carer Advocate
Comment date
22 November 2014
There has been many discussions regarding of the position of Carer, where it has been acknowledged that we should be accepted as Equal Partners, however again we have not been mentioned.

The Statutory services could learn from us, how we cope, and how some carers do not cope. I have long supported a Doctor who ended up suffering from Clinical Depression herself, her son was discharged from hospital many years ago, with support, this support was withdrawn, resulting in numerous admissions, now in hospital again, with a broken leg, and other injuries., she prays he will not be discharged to soon, and without the support he requires.


Patient & Public,
Comment date
10 February 2016
You do understand that GPs are not employees of our NHS, don't you. They are independent contractors to the service.
Despite that, the Government has given them, via the GP controlled CCGs, the responsibility to buy in services worth £65 000 000 000 on behalf of the NHS.
Looks like Privatization to many of us = what do you 'think'?

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