We have never needed patient advocacy and citizen advocacy more than we need it now

Caroline Clarke, CEO at the Royal Free London NHS Foundation Trust, writes:


Thank you for giving me the opportunity to speak at your AGM and to restate what I said then to your members in this blog.

I am the CEO at the Royal Free London NHS Foundation Trust, a group of hospitals in North London and up into Hertfordshire. We serve a population of around one and a half million.

I have relapsing remitting MS.  I was diagnosed with Transverse Myelitis in 2007, and then got an “MS hug” in 2016 and thanks to the advice of the medical director (Prof. Steve Powis, now at NHS England) I got a quick diagnosis and disease modifying treatment at an early stage of the disease. I’ve also had the support of Alliance member Overcoming MS, of which I’m a trustee, which has really helped me to manage my condition.

I wish more people knew about organisations like Overcoming MS. I wish I had been referred to OMS earlier on in my journey.  Charities like OMS can really give you a sense of control over your condition, and hope for the future. 

Caroline Clarke

I want to stress the importance of the work that you do as charities to the patients that we treat,  and to consider the things that we can do together.   Every day I feel honoured to work in the NHS with staff who not only undertake ground-breaking research but also manage huge waiting lists and massive pressures in our urgent care system.

Like lots of you in these crazy times they have gone on coming to work, regardless of how difficult it has been. I try to be optimistic and I think that’s a quality that’s essential in the healthcare business.

You will have read about the challenges facing the NHS in the press and it is the same on the ground.  What that means in practice is that we are super busy.

At the moment our emergency departments are about twenty-five per cent busier than they would normally be at this time of year.

In planned care it’s the same sort of picture.  Nationally there are 5.7 million patients waiting for some form of appointment or treatment, up from 4 million, so actually an increase of more than twenty-five percent, and the waiting list is continuing to rise. This is because we couldn’t  really treat that many people for non-urgent surgery during the first two waves of the pandemic, so the waiting lists grew.  We had to redeploy many of our staff into treating patients with Covid. It was the only way to stay safe.  And so the impact is really felt in the growing waiting lists now. 

You will also have read about the pressures in social care. The social care system was creaking before the pandemic. For ten years, across social care and health care, the funding has been at best flat and yet we are treating more and more patients with more and more complex conditions.  We’ve seen nursing homes close, and in health and social care we face difficulties in recruiting staff.  Good social care is needed by so many people and is critical to the functioning of our society and the NHS.

Meanwhile the NHS is re-organising, which means lots of new acronyms to get used to! In the new world the CCGs (clinical commissioning groups) will be replaced by ICSs (Integrated Care Systems) or ICBs (Integrated Care Boards) designed to do away with tensions in the previous system which was more about competition and regulation.

These ICSs are designed to make providers of health and social care work much more closely together, whether they are in the voluntary, state or independent sectors.   I am spending much more time now trying to take the walls of my hospital down. These walls that place barriers in the way of really straightforward care. Because as a patient, I just want a really clear journey through the system to get the best care I can. I don’t really mind who provides it, or which organisation they are from. I just want the right care, delivered to me by the best professionals. 

Caroline Clarke

I can give you an example of what currently happens in our non-integrated system, and it concerns the giving of a bath. If I am a patient at home receiving domiciliary care and I need assistance to have a bath, a social-care provided bath will be means-tested, whereas a health-care bath will be free.  This tension leads to all sorts of stage arrangements about who provides baths, and when.  All I want is a bath and I want my care providers to work out how to do it in a seamless way.  ICSs are designed to make us sort out this kind of thing. I’ve been in the NHS since 1991 and the bath issue has been with us all that time so if we can sort that out we will have made progress.

Another area I want to discuss is how health care can vary. As a lay person I used to imagine that if I walked into any hospital in the country I would get the same set of tests for a particular set of symptoms, and surprisingly this is not always the case. There is variation everywhere, depending on when and where people were trained, what services are available locally, time of day, and a ton of other complicating factors.

That’s why at the Royal Free we have been working hard on reducing unwarranted variation and improving the quality and cost of care by getting the clinicians to standardise and digitise care processes (or pathways) across all the hospitals in our group. This work was initially led by Prof. Stephen Powis and is now clinically led and owned, and co-designed with patients.   You can’t impose standard pathways on clinical teams, as they have to work through and to decide what is best for their patient population, drawing on best practice.  But giving clinicians data, to allow them to design the best services with their patients has materially changed the way we provide services across all our hospitals.   Not only has it improved the quality of care, it has also reduced costs.  And of course, you will all know that there is a lot of variation across neurological services, and this kind of approach can really help drive up standards.

The re-organisation of the NHS represents an opportunity for charities and patient bodies to fill gaps.

We have never needed patient advocacy and citizen advocacy more than we need it now. The work we have done on standardising care processes has patients at its heart. When you put a patient into a conversation with a clinician about service redesign, the outcome is often very different. So I think there’s a really important role for organisations involved in the Alliance to help ensure that we do this well.

I’ll finish with some thoughts on how best to engage with ICSs.  ICSs are new bodies – there may be new leadership teams, and they won’t necessarily have developed strategies for how to deal with the issues and opportunities that you know about.  For me, coming with a clear description of the challenges your patients face, and a set of possible solutions usually opens doors.  You will invariably know more than the person you are talking to!

I genuinely believe that the policy shift to increased collaboration and integration is good news for the voluntary sector and that the organisations represented by the Alliance have a huge amount to offer.  I hope you go from strength to strength.