Dementia

Lord Weir of Ballyholme Excerpts

Thursday 18th January 2024 Grand Committee

[Lord Weir of Ballyholme (DUP)]

My Lords, as both a member of the APPG and formerly a carer for my late mother, who suffered from vascular dementia, I welcome this debate and thank the noble Baroness, Lady Browning, for bringing it forward.

We are facing a tsunami of additional care needs in this country as a result of dementia, and it will require a step change from government, of what whatever political complexion. A myriad of solutions is required—some of them have been outlined today—but the noble Baroness, Lady Browning, was right to highlight a key component: parity of esteem between healthcare and social care.

Some of the implications of that lack of parity at present can be seen. It has been mentioned already that 45% of the social care workforce does not have direct training in dementia. The number of vacancies within social care is estimated to be 192,000, because there is a difficulty with both recruitment and retention of staff. The implication for individual dementia patients and their families across the country is a postcode lottery where both the quantity and the quality of care are deeply variable. For many of those families, the gap in what can be provided to them means that what they get simply does not cover the needs of the individual patient, and, somehow, they have to cope both financially and from a caring point of view to fill that gap.

If we can meet this issue of parity, there are a number of benefits. First, in many ways, we are facing an even greater difficulty than the official estimates of numbers show. Fortunately, we are beginning to see some solutions. New drugs are likely to appear in the near future, and they will at the very least slow the progress of dementia. That is a very good thing—it will mean that people live longer—but the implication of it is that, ultimately, we will probably have a lot more people with dementia. It will also shift the pressures from healthcare directly and to a much greater extent on to social care.

Secondly, parity will act as a driver for a much more joined-up approach to tackling dementia. In Northern Ireland, healthcare and social care have always been under one department and one system. That is not necessarily a panacea, but no one in Northern Ireland would try to disaggregate those two elements—it is perhaps one of the rare occasions when the rest of the country could learn something from Northern Ireland.

Thirdly, as indicated, parity would have major financial implications for the country’s healthcare. Too many people are unnecessarily in hospital and too many are not only admitted to hospital when they do not need to be but bed-blocking because there is nowhere to place them. Most of all, it will increase choice for families. For many who have dementia, being in hospital or in a residential home is either a choice they make or, from a practical point of view, there is not really an alternative. However, on many occasions, it has been forced on people because they do not have the choice.

Dealing with the issue of parity between healthcare and social care will be a key driver in ensuring that we can look after those with dementia and their families to meet the needs not just of now but of the future.

Organ Donations

Lord Weir of Ballyholme Excerpts

Tuesday 12th December 2023 Lords Chamber

[Lord Weir of Ballyholme (DUP)]

My Lords, I welcome the debate brought forward by the noble Lord, Lord Hunt, and the focus that it enables on this issue. I am supportive of the principle of the legislation that he brought forward, which balances out the opportunity for increasing those making life-saving organ donations, while still being wedded to the principle of voluntary decisions to donate.

In the short time available, I will concentrate on a point touched on by the noble Lord—the specific position of those suffering from cystic fibrosis. This covers about 10,500 people in the United Kingdom, and organ donation is particularly relevant to them because it is highly likely that the vast majority will require it at some point in their lives. Normally that is in the nature of a double lung transplant, but it can also have impact on organ donations involving the stomach. As he indicated, it is not simply a question of widening the pool of people willing to give a donation. The latest figures suggest that in 2022 there were 33 donors providing lungs within the system, but only six operations involving a lung transplant. The figure cited by the Cystic Fibrosis Trust makes reference to about 15%. That led, in part, to the Government’s establishment of their own Organ Utilisation Group, which reported in 2023 and highlighted a wide variety of practice in both the type of organs and between different units.

We have also seen barriers to utilisation that can happen for non-clinical reasons—for example, the absence of a theatre where the operation can be performed. Arising from that report were 12 recommendations. It would be useful if the Government could indicate whether they are committed to all 12 of those recommendations, and any progress they have made on their implementation.

With cystic fibrosis we concentrate very much on the issue of organ donation supply, but demand is also critical. We know that the modular treatment developed in the past few years can reduce the pressures of demand. Agreement was reached in 2019 between the NHS and those providing medications that lead to modular treatment. On the face of it, the initial reports suggest there is clear clinical evidence that it is of benefit. For example, 96 people joined the cystic fibrosis transplant waiting list in 2019, while in 2022 the figure was just 22. What is concerning is that the initial conclusion drawn is that this provides something clinically effective, but there is a question mark over value for money. It is critical that this be resolved, because it is leaving many families in a very difficult position.

This highlights that widening the pool of people giving consent for organised donation is critical for individual families. That is only one part of the picture—the other issues of utilisation of organs and demand is critical as well. That provides us with the full picture and jigsaw, and I am interested in the Minister’s response on those issues.

Adult Social Care

Lord Weir of Ballyholme Excerpts

Wednesday 22nd November 2023 Lords Chamber

[Lord Markham (Con)]

My noble friend is correct; they are the bedrock and are valued, and it is important that we make them feel valued. As I said, we are reforming the process in order to give them a qualification, which means that that work in the social care setting will be transferable between positions. In addition, if they want to go further into the medical service, be it nursing or other areas, a modular qualification system will enable them to build towards that, so that they not only feel valued but are in a long-term career structure.

[Lord Weir of Ballyholme (DUP)]

My Lords, many families seeking adult social care can find that availability and quality are patchy; and particularly for those living in rural areas, the help they receive can effectively be a postcode lottery. What steps are the Government taking to drive consistency and equality throughout the system, so that every family can receive the level of adult social care that is needed for their loved ones?

[Lord Markham (Con)]

That is a good point. We have given the CQC responsibility for measuring local authority provision of care. Overall, we are seeing a high satisfaction rate—89%—and the number of complaints went down by 16% in the last year, so these things are making a difference.

Adult Social Care (Adult Social Care Committee Report)

Lord Weir of Ballyholme Excerpts

Monday 16th October 2023 Lords Chamber

[Lord Weir of Ballyholme (DUP)]

My Lords, I too commend this report and thank the noble Baroness, Lady Andrews, and the committee for producing it, not simply in my capacity as a Member of this House but as a former carer of my late mother.

The report is deeply prescient. For too long, the issue of the need for change in adult social care has been long-fingered, and it is understandable why parties of different complexions have not grasped the issue, given the toxicity particularly around how we pay for the additional needs of adult social care. But that luxury of putting things on the long finger is something that we cannot afford to ignore any longer.

Mention has been made of an estimated 10 million people in this country being impacted by adult social care, and that number is set to grow almost exponentially, particularly as we see advances in medical science which mean that people will die less of particular conditions but will have to live with them. Nowhere is that more pertinent than with dementia and Alzheimer’s, where the numbers are probably set to double in the next few years.

In the time available to me, I want to touch on three aspects of the report. The first is the need for codesign in any plan for care—codesign with carers and also those in receipt of care. If we simply look for a one-size-fits-all solution for individuals, it will not work; similarly, if we simply seek to impose it on people, it will be a recipe for disaster.

Secondly, we need a consistency of approach across the country. We are all too aware, as is highlighted by the report itself, that for many people the quality and quantity of availability of adult social care is a postcode lottery. I know that, even in Northern Ireland, where there is a greater level of co-ordination, because health and social care are within the same department, that is no guarantee of a perfectly consistent result. I was very fortunate in my own circumstances that the company providing the care for my mother was a very good one, but I know that if I was maybe 10 or 15 miles either side of where I live, that level of care might not necessarily have been available.

As indicated by the report, we need investment in the extent of training required for the workforce—and, frankly, we need to raise the salaries of the workforce to ensure that we attract and retain sufficient numbers to be able to provide that level of social care. On consistency of provision, we need to ensure that the pathways for carers are clear and that it is easy to obtain help. As someone who was an elected representative, filling in the forms and accessing the care was quite easy for me—but many others are left in a very difficult position. I also know that, perhaps because of the level of support that I and my family were able to give my mother through finances and savings, we were able to bridge the gap between what could be afforded and what was required. But for many families that is not available.

Thirdly, we need a level of co-ordination in the system. I have mentioned that in Northern Ireland health and social care are within the one system. That in itself is not a panacea for all issues—but we have seen in a whole range of health issues that within the broader health service there is a level of silo mentality that still maintains. A number of us had a meeting today about palliative care, where again the failure perhaps to realise where there can be investment to save and to ensure a co-ordinated approach damages what can be provided and the quality of that provision.

The report highlights a cocktail of measures that are required to improve adult social care. Ultimately, it requires all of us to commit to a step change in what we can provide in adult social care. I agree with the remarks of the noble Lord, Lord Polak, when he talked about the need to take the politics out of this issue. Rather than try to create a political football in which we blame one party or another, we need to work together to try to deliver a consensus. It is often said that we have a health service in this country that is in danger of being broken. If we do not tackle properly adult social care, it will not be a question of it simply being broken—it will be irretrievably and irreversibly unfixable.

Mental Health Services: Huntington’s Disease

Lord Weir of Ballyholme Excerpts

Monday 12th June 2023 Lords Chamber

[Lord Markham (Con)]

The noble Baroness makes a very good point; it is a whole-family problem. The investment we are talking about, in allowing us to access 2 million extra mental health patients, is about making sure we have got the numbers. The digital therapeutics are another way we are making sure there is access. The specific point the noble Baroness makes about looking at the families of people with Huntington’s disease is a good point that I will take back.

[Lord Weir of Ballyholme (DUP)]

My Lords, there is also a great deal of evidence that Huntington’s disease can be one of the conditions which can lead to dementia. It is a concern both in Huntington’s disease and dementia that there is a level of underreferral for mental health services. What specific action is being taken to tackle this issue, given that figures suggest the number of referrals for those suffering from Huntington’s disease and dementia to mental health services is minuscule compared with the level of demand?

[Lord Markham (Con)]

The research from the Huntington’s Disease Association, albeit with a small sample size of only 100, suggests there is an issue here. That is why I spoke to Minister Whately about this just this morning. She is being very firm in terms of tasking the NHS to come back with a plan to make sure we get that diagnosis. We will not know until we see the situation across a larger sample size, but clearly it is something we need to work more on.

Social Care: Workforce Strategy

Lord Weir of Ballyholme Excerpts

Wednesday 22nd March 2023 Lords Chamber

[Lord Markham (Con)]

I apologise because, in some ways, the timing is slightly unfortunate with the report coming out before the Recess, as is my understanding. I am not allowed to steal much of Minister Whateley’s thunder on that, but I will answer as best as I can. I hope that noble Lords will be pleased that questions around training, recognition of the importance of the service and career structure are all addressed in the report.

[Lord Weir of Ballyholme (DUP)]

My Lords, in my experience, many families in need of social care for members of their families find themselves in a form of postcode lottery, where the quality and quantity of social care that they receive is very much dependent on the local availability of social care workers. What further steps are the Government taking to try to ensure consistency of social care provision for people throughout the country?

[Lord Markham (Con)]

The noble Lord is correct, in that this is pivotal to the whole health service and to health and well-being. It is very much the duty of the integrated care boards, and our Ministers are personally holding them to account on this. I have frequent meetings on seven integrated care boards, and this is very much on the agenda. The other six Ministers have 42 in total, seven each, so that we can make sure we hold them to account.