Volunteering is good for us, so says one the 6 priorities written in the NHS 5 Year Forward View. (That along with person-centred care, partnership services, focus on equality and lowering inequality, carer support involvement & voluntary/social enterprise and housing.)

I’m sorry but I have a big issue with the NHS relying on the continued altruism & voluntary time given by patients with long term conditions, through peer mentoring, patient advisory boards or patient forums etc. Sure, altruism and volunteering are MASSIVELY important for patient well-being and self-esteem, but I suggest that a great many ‘expert’ patients are not happy and what’s more feel pretty devalued too.

Patients are said by NHS England to be the key to delivering real person-centred care in Primary Care, but really? Are expert patients, who know more than consultants really listened to? Furthermore, some patients are out of pocket. Often, their transport costs aren’t covered by the CCG or advisory board, let alone a half or full day NHS pay rate!

In fact, one patient estimated that the personal cost to them of attending advisory boards over the year was £1,800! Quite rightly they realised this could of paid for an equally beneficial holiday. So not only are patients with long term conditions having to cope with societal inequality, loss of income, value and worth, relationship breakdowns, isolation etc. They are now actually funding the NHS! I don’t think that’s fair on patients. Patients should be reimbursed just like their clinical counterparts. Why is there such inequality for patients, especially when inequality is something the 5 year Forward View is trying to address?

I was a high user of the NHS https://youtu.be/CRjoAt9k5lE.  I also have ‘lived experience’ and still  struggle with the effects of a stroke and a damaged brain at the age of 46. I founded and voluntarily ran a registered stroke coaching/advocacy/research/speaking charity for 5 years – Fighting Strokes. Some of my work is here: http://www.kateallatt.com/

So what would I do?

1.      Commissioners/charities please spend less on Mindfulness training courses! These cost around £9k for a day’s training. Please start really valuing ‘super’ patient advisors. We mentors, coaches,conference speakers (where patients are often wheeled out at the end of a conference when most people start to go home)! Value patients in their pockets, because compliments don’t pay the bills. Please stop perpetuating the dreadful inequality! I don’t ask for much re-imbursement but patients should be financially valued. Furthermore, stroke is happening more to young people, so just how many young people will be represented on your boards in the future?

Here’s a scenario:  So a patient may have lost their pre-stroke job after their life altering event? Perhaps they weren’t retired? Maybe they have no pension? Maybe they have a car loan or a mortgage with teenagers to fund through university? They need money!

2.      Provide a careers advice service to patients of working age who are living with a life altering conditions or long term condition.

3.      Here’s another idea ( I am a patient expert afterall ;))

Why not give these jobs – Healthcare Advisor, Patient support, Patient Advisor, Patient Services Manager, Patient Engagement Consultants, Volunteer Coordinator etc – to real  patients! Instead of career types who maybe up-to-date Microsoft Office or COPD skills but have no idea, no natural empathy, little compassion and understanding for patients real struggles. If we got a proper handle of community life, I predict we would massively cut prescriptions of anti-depressants, GP appointments and hospital re-admissions.

Anyway, what do I know I’m just a patient!

Kate Allatt


Author of Running Free Breaking Out of Locked In Syndrome.