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.

Child Sexual Abuse: Football Clubs

Baroness Brinton Excerpts

Thursday 15th December 2016 Lords Chamber

[Baroness Brinton (LD)]

My Lords, for those of us who have for decades supported football at all levels, from being the mum on the touchline on the Sunday boy’s league through to being a season ticket holder at professional games at various levels, the recent revelations cast an ugly shadow on the beautiful game. That is why I start by paying tribute to all those who have had the courage to come forward and witness through their personal stories, saying what until now has been unsayable.

We know that child sexual abuse is a society-wide problem. The problem has been getting everyone in society to accept that. The one good that can come from these revelations is that it will, I hope, become easier for others who have been abused to come forward in future.

Anne Longfield, the Children’s Commissioner, in her 2015 report on protecting children from harm, cites the following in her assessment of the impact of child sexual abuse in the family environment, but it is just as pertinent outside the family environment:

“Many victims do not recognise that they have been sexually abused until much later in life … Victims and survivors face considerable barriers to telling anyone and accessing help … Child-sexual abuse … casts a long shadow over the life of victims and survivors”.

I particularly welcome the proposal this week that a trust should be established to assist former young footballers who have been abused. The scale of abuse is huge, and no doubt there is more to follow in football and other sports where coaches come into contact with young people.

However, it is of deep concern that victims’ charities and organisations are not currently regulated by any governing body, statutory or voluntary. In effect, that means that anybody could establish a charity without the necessary qualifications. This in itself raises safeguarding issues, especially due to the vulnerability of the victims. That is why I tabled amendments to the Policing and Crime Bill that would place statutory duties on elected policing bodies and the Commissioner for Victims and Witnesses to ensure that quality standards are developed, published and adhered to.

Your Lordships’ House debated the amendments and agreed to them on Monday night and, if implemented, they would ensure that a quality standard in relation to the provision of victims’ services was prepared and published. They would also ensure that the quality standard is reviewed at least every five years; and that, in preparing the quality standards, the commissioner and the policing bodies would have a duty to consult the public. These quality standards would cover appropriate qualifications: minimum standard of experience; correct indemnity insurance; compliance with data protection and safeguarding laws; complaints procedures; regulatory bodies to take complaints and ensure that the standards are adhered to; and a strict compliance with the victims’ code. Those quality standards would ensure much-needed services for abused boys and girls, men and women in sports and elsewhere, and that they are adhered to to protect everyone. Can the Minister help us to progress these when the amendments return to the Commons?

Finally, I mention the excellent work of Mandate Now, the campaigning group, which makes the important point that we need mandatory reporting of possible child sexual abuse, which we do not have. Here I pay tribute to my noble friend Lady Walmsley, who has long been advocating this in your Lordships’ House. Mandate Now makes it plain that the FA’s own safeguarding policy is confused and inconsistent. While it says that it is mandatory to report, when it is not, its procedures are only guidance, not a requirement on its bodies. Worse, it is not clear who should undergo a criminal records check. When will mandatory reporting be introduced, and when will those inconsistencies be clarified? The time for prevarication on this is now over.

Charities (Protection and Social Investment) Bill [HL]

Baroness Brinton Excerpts

Wednesday 10th June 2015 Lords Chamber

[Baroness Brinton (LD)]

I start by also congratulating the noble Lord, Lord Bridges of Headley, on his maiden speech. It is interesting that others have commented on his mix of charitable and business interests, but much of the charitable world has benefited from the involvement of those in business and industry. Having served as a trustee of a range of charities, and on the executive of charities, over the last 20 to 25 years, I know that the expertise brought in from outside is one of the things that has most transformed the charitable sector. I do not recall any charity talking about risk assessment any particular detail 20 years ago in. The whole planning of activity and finance has been transformed in smaller charities across the country, and there is much to commend the charitable sector in that regard. I am delighted to welcome the Minister because of his expertise, but also because he embodies the expertise that we see in our charities throughout the country.

I declare my interests as recorded in the register. As I have already outlined, I have current and past trusteeships. I am a trustee of UNICEF UK, of the Joseph Rowntree Reform Trust and of UFI Charitable Trust, which provides grants for technology in further education and which used to run learndirect. That is a very diverse range of charities, which sums up the whole sector: we all come with expertise from different areas, but public benefit is key. I am very glad to follow the noble Lord, Lord Moynihan, because later in my speech I will refer to disbenefit, detriment and harm—issues that have not been raised so far today.

I am a trustee of UNICEF UK and in the past have been a trustee of Christian Blind Mission, both of which work in international development. They have an understanding of assessing risk in the field around the world for staff and volunteers, and for the beneficiaries in those communities, who often are at risk from terrorists, opposing armies or natural disasters. It is always difficult for those charities to assess such risk and to make a decision when things are happening thousands of miles away. I echo the concerns expressed by others about the breadth of restrictions relating to any activity that might come up against terrorism. However, most other speakers have thought of that only in the context of charities run for the benefit of Muslims and those in Muslim countries. That is not the case. Any charity working in international development has to be fully aware of it. We need to look at the practicalities of what is happening in different parts of the world, rather than make assumptions. It becomes very easy to use a blanket statement—“We can resolve this, we can stop people being trustees in the future, we can wind charities up”—when it is actually extraordinarily difficult for the charity to control some of the things happening on the periphery.

I also wanted to ponder the point made by the noble Lord, Lord Borwick, on the different nature of charities and his interesting notion that we could have a registered charity versus one that was publicly funded. I have to say that, for me, that jars rather. In recent years, many charities have started to receive funding from the public purse—not just from government, but from local government and from the National Health Service—to deliver services to a particular community that that charity may understand well. Indeed, many people who have said that it should be not just the state that delivers those services have welcomed the expertise of a large charity or a small charity that can provide something relevant. In my book, those charities deserve just as much the high accolade of being a registered charity, as outlined by the noble Lord, Lord Borwick, simply because of their expertise and public benefit, despite the fact that the resources may come from the public purse. I therefore worry that we will get into a semantic debate about “which charity” and where its funds come from. I understand that the nature of charities has changed as money has come from the public purse, as well as from private donors.

In international development, we have chosen to move away from handing funding over to foreign Governments. In the previous coalition Government, we made a particular point where there were concerns about human rights. We handed money to charities to deliver partly because they were accountable to us. I am concerned that they would be denigrated as not quite a top charity if they received government funding.

The focus of what I want to say comes back to this issue of “disbenefit”. I welcome the clauses in the Bill that give the Charity Commission further strength and resource, particularly official warning by the commission and other actions that it can take. However, I have spoken in your Lordships’ House before about the Exclusive Brethren, also known as the Plymouth Brethren Christian Church. It had been asking since February 2009 for recognition for the Preston Down Trust, one of its meeting halls. There was an investigation —one of the few that the Charity Commission has carried out over the years, given the hundreds of thousands of charities registered—partly because there was concern about public benefit. It became apparent in its investigation that there was public disbenefit, detriment and harm. The Bill does not seem to address those issues. I will come back to those in more detail in Committee.

Something that concerned me from the investigation and the subsequent Charity Commission report is that—despite much detail in the report that accepted that there was detriment, harm and disbenefit— the Preston Down Trust was given charitable status. That seems quite extraordinary. I understand that it was given with the proviso that changes had to be made and that the commission would assess it, but if we are to be strict in other areas of the charitable sector, I wonder whether we should also be strict if we or the commission see evidence of detriment or harm, and whether there should not be provision of charitable status. The organisation submitting the application should have to prove that things had changed and that it was now able to offer public benefit as well. Therefore, I will seek an amendment from the Minister on that issue and look forward to discussing it at a later stage.

Overall, the Bill makes the real strides in policing and regulation that the Charity Commission itself says need to be made if it is to be able to do its job. I echo the comments of those noble Lords throughout the House who said that we must also make sure that the Charity Commission has the funds to deliver these provisions. I hope that the funds will follow to meet the extra requirements and responsibilities that the Bill will place on the commission.