National Health Service

Baroness Brinton Excerpts

Tuesday 17th June 2014 Grand Committee

[Baroness Brinton (LD)]

My Lords, I thank the noble Lord, Lord Crisp, for initiating this interesting debate on citizen and patient power. In the brief time available I want to focus on an issue that I believe is more likely to produce real reform in the NHS than many structural changes.

Before doing so, I must declare my interest as a patient with a chronic illness—rheumatoid arthritis—and it is RA Awareness Week, to get the plug in. I have some knowledge of my disease and its consequences and read up on treatments and their side effects. Later on I will talk a bit about the expert patient programme and it will be obvious that I am a convert to it.

First, however, let us go back 50 years. In those days, doctors liked the bedside manner approach, key to which was putting patients at their ease. It certainly was not intended to give patients more power in the NHS. The picture that comes to mind is of James Robertson Justice as the paternalist consultant, patting a patient on the knee and saying, “Don’t worry your pretty little head about it, my dear, that’s my job”—rather like the consultant mentioned by the noble Baroness, Lady Pitkeathley. The good news is that things have improved greatly, but sadly it is also patchy.

Empowering patients about their health issues and treatment seems to have been introduced first in chronic conditions, where a range of healthcare professionals are involved, and frankly, where it is in the best interests of the NHS to make patients more involved in their treatment, whether informally or in a more formal system such as the NHS expert patient programme. In April this year the Health Foundation published a thought paper by Dr Alf Collins, a clinical expert in pain management. This brief 12-page paper is well worth the read: it is a revelation. Right at the start the Health Foundation sets out its goals for,

“a more person-centred health care system. One that supports people to make informed decisions about and successfully manage their own health and care, including choosing when to let others act on our behalf”.

It goes on to say:

“This requires a change in behaviour and mindset from patients and clinicians, supported by a system that puts patients at its heart”.

Let me give you two brief examples of people that I know, to illustrate the difference between the more usual and traditional patient-reported outcome measure, versus the person-centred patient-reported experience measure.

Jane—not her real name—has a chronic disease with pain and fatigue. She is finding her new medication hard to manage, it is making her sick, and she is worried about managing her children and her part-time job. She goes to see her GP and bursts into tears, saying that the pain is excruciating, she thinks the medication is not working and she is at her wits’ end. The GP says, in a kindly way, that she wants to refer her to the mental health team for some psychiatric support. Jane goes home, absolutely convinced that the GP thinks she is mad and does not believe that she is ill at all. Jane's story is real; in fact, yesterday I read it on a bulletin board. The GP was focusing on the outcome. What could she do for this patient to help her instantly? There was a magic solution: a referral elsewhere.

Contrast that with another patient. It is the same illness with the same treatment, but all the healthcare professionals involved with her care ask her questions. The GP in this case asks about the side-effects and what she wants to achieve: does she need time off work, or medication to reduce the nausea so that she can continue to work? She is reminded that depression is a common issue for people with this disease, especially for people with her side-effects at the moment. Does she want further help? The patient consultation lasts exactly the same time, but the latter patient walks away with reassurance, knowing that if she needs more help it is available, and with a prescription for the nausea so that she can try to stay working, which should also help to reduce the depression. This, too, is a recent story—it is mine.

The latter is a patient-reported experience measure and is great for the patient. It is worrying for commissioners, though, because most commissioning is based on clear, achievable outcomes—referrals, medication, operations—rather than the softer and qualitative experience measures. A typical NHS expert patient programme provides patients help with dealing with pain and fatigue; relaxation techniques; healthy eating and exercise; how to communicate with their family, friends and healthcare professionals; and how they can best plan for their future.

Research into expert patients shows that they need fewer interventions, are less anxious, more confident, can communicate better with healthcare professionals, take less time off work and are less likely to suffer acute episodes requiring expensive admission to hospital.

I agree with the noble Lord, Lord Crisp, that England may well be ahead of the curve. A French consultant gave a Gallic version of James Robertson Justice to my mother-in-law just last year, even though she is a retired nursing sister with 40 years’ experience of the NHS and speaks fluent French. What I like about Dr Collins’s paper for the Health Foundation is that it sets out clearly for healthcare professionals how they can move to this different mindset. What is particularly encouraging is that it really helps patients and saves money. What is not to like? Let us hope that this is the sort of thing that moves us to real patient empowerment in the future.