Health and Social Care

Baroness Brinton Excerpts

Thursday 15th December 2016 Lords Chamber

[Baroness Brinton (LD)]

My Lords, I, too, thank the noble Lord, Lord Harris of Haringey, for instigating this important debate and add my condolences to Lord Prior’s family: his voice will be sadly missed, not just in this House but in the whole of the health and social care sector, to which he devoted much of his political life.

As a patient and service user with rheumatoid arthritis, a life-limiting condition, I have extensive experience of the NHS, but also of the charitable sector, which I suspect is not often mentioned in patient engagement. In particular, I put on record my thanks to the National Rheumatoid Arthritis Society for its advocacy and support, Arthritis Care, which, before I was in my wheelchair, kept me out of one with tai chi for people with disabilities, and Arthritis Research UK, for its medical and practical daily living research.

Over the years, the NHS has launched a number of initiatives to improve patient engagement, and the words are very fine. It is interesting to note from the 2015 report from the think tank Reform entitled Expert Patients that the NHS constitution was established to drive greater patient engagement yet, according to one survey, 76% of patients had not heard of the constitution before receiving any treatment and only just over half were aware of their right to choice of NHS services. According to a survey three years ago, nearly 100% of patients wanted to access their electronic records but 67% did not know where to start to get them.

The 2002 Wanless review of health spending projected that higher levels of public engagement could both improve health outcomes and reduce cost—very important in our society 15 years on, with a significantly ageing population and real pressures on our health and social care sector. Under Wanless’s fully engaged scenario—your Lordships will remember that he had three scenarios about how seriously the NHS could implement engagement—a key component of healthcare expenditure was public behaviour: not how the service responds over the next 20 years but how the public and patients respond. The problem is that public and patients need education on how to respond. It is absolutely clear that costs could be reduced if that were the case, but I think most patients with experience of the NHS would say that their experience was patchy—even expert patients such as myself, who probably have considerably more than the average interaction with the NHS.

Patient awareness is entirely reliant on information and attitude support from every quarter. It was interesting to hear noble Lords contribute their experience of A&E. On an unfortunate visit to A&E when people thought I was coming down with an infection, I was told by the A&E consultant that I knew too much about my disease; whereas my consultant is always keen to ensure that his patients know and understand exactly what is going on, so that they can recognise problems. Continuing my theme of using rheumatoid arthritis as my exemplar of where it can work extremely well, the British Society for Rheumatology service care pathway articulates very clearly how even non-health interactions are vital. Patients’ understanding of the need for an improved diet and making sure that they get out and meet new people, that a life-limiting disease will also affect their emotional life, that they will need to address that and get help when they need it, and that they need self-awareness of both their disease and self-worth, because people often end up having to give up work—all those things, and the informal education you get from that, will increase confidence. It will also improve health and decrease anxiety, provide better sleep, make patients want to try new things and increase their motivation. All those things then have a knock-on effect for every part of the society that they are in, whether it is with family, work, friends or, very importantly, in the healthcare sector.

Just to give noble Lords a picture of what was happening with rheumatoid arthritis 20 years ago, people with my level of disease would spend perhaps three spells in hospital a year—perhaps a week at a time when they had a flare-up—and they had very little access to physiotherapy. Five years ago, in-patient stays were virtually removed, but treatment was being given as with cancer treatment: you would go in for a half-day a month for an infusion. Now most patients with the sort of disease that I have are self-injecting at home and—whisper it carefully—have interaction with the private sector, which delivers my injections and provides support in the early days to make sure that all is going on well. So it is not just about acute hospital times and costs. With this one disease, through the attitude of the consultants working with patients, the entire patient pathway has been completely transformed within five years and is unrecognisable from that of 20 years ago.

NHS RightCare has articulated very well some of the issues about how we increase patient pathways at an earliest possible date. One or two very good examples are offered by Professor Matthew Cripps, of fictional pathways. The first is for someone with diabetes. In our current standard care system, at the age of 45, after two years of a bit of trouble, Paul—this fictitious patient—goes to the GP, who does tests. She is a good GP, but she does not understand about diabetes pathways, so she manages his condition with diet, exercise and pills, but it is not working. Five years on, he has given up smoking and is reducing his drink. He is certainly managing his exercise, but his condition has worsened and, within two years, he is facing amputation of a leg; his condition further deteriorates, with heart problems as well, and within a few years he dies. The alternative patient pathway would mean that from the moment he first went to his GP, the entire health system would have picked up his support. He would be referred to specialist clinics for advice and support, including on stopping smoking, changing his diet and making sure that he got the right exercise. That first journey costs £49,000 to the NHS; the second, where the condition is managed over the same period, costs £9,000. So not only do we have a happy patient with a significantly reduced exposure to his disease but we have a significant cost saving to the NHS.

The other example is of elder care, which is often not talked about with patient experience. Not many people are aware that the time that somebody aged 65-plus who goes in after a fall, say, spends in hospital can equate to a year per week in muscle deterioration, so that you could come out after five weeks in hospital five years older. Or, if you spend, as is currently common with delayed discharge, 10 weeks in hospital, you could have aged 10 years in your body, with all the concomitant problems that go with that.

It is extremely important that every single part of the health and social care system participates in patient involvement. Wanless predicted that we could save a significant amount of money, but the Reform think tank updated his figures and said that by 2021, with real engagement, the NHS could save £1.9 billion, rising to £3 billion by 2063.

Simon Stevens, in his first speech as chief executive of the NHS, said:

“At a time when resources are tight, we’re going to have to find new ways of tapping into … sources of ‘renewable energy’”—

by,

“boosting the critical role that patients play in their own health and care”.

The example that I just gave from RightCare shows that it is not consistent in the NHS, nor indeed is the balance that we have as a society between health and social care working for us. The public health and social care system—which is where, importantly, Healthwatch comes in; I will not repeat the issues about its funding—is absolutely vital.

I spent a day with Healthwatch Stockport just over a year ago. The groups do not perceive themselves as regulators. They understand that it is part of their role but they are absolutely clear that they represent the voice of the people who use services and carers, and that they have responsibility for overseeing those services and reporting concerns back. There is that regulatory role but it is about the community work that they are doing. I saw this with ordinary people, the patients who had developed their own interest, working as the voice back to the NHS to make sure that things were working in Stockport. It was an extremely impressive community operation.

I support Healthwatch and the health and well-being boards as absolutely vital in local development. The noble Lord, Lord Lansley, is right to say that this was a priority for the Lib Dems when they were in government. The problem we face these days is that the funding gap, both for local councils and for social care, is creating a real problem. The King’s Fund said that a £2.4 billion funding gap as a result of the refusal to fund social care in the Autumn Statement is very real. That is one reason why the Liberal Democrats made it absolutely plain that we must prioritise funding immediately—not wait until next year’s local government settlement can come in to start to deliver. We hope the announcement will follow later today; it has been widely leaked. Two per cent per annum over three years of increased council tax to 3% over two years in council tax is not new money. That will not solve the problem, nor will it resolve the issues about patient engagement.