Palliative and End-of-life Care: Funding

Baroness Fraser of Craigmaddie Excerpts

Wednesday 4th September 2024 Lords Chamber

[Baroness Merron (Lab)]

My noble friend is absolutely right, and I certainly agree with the points she has made. Those who care for their loved ones are absolutely crucial to ensuring that the right care is provided in the right place and the right way for that person. Everybody is individual, and we want a society where everybody receives the right kind of care at the end of their life. That should be a time of dignity, and we want to provide that.

[Baroness Fraser of Craigmaddie (Con)]

My Lords, people with neurological conditions face many barriers to accessing palliative care, even though it could do them a huge amount of good. The answers to this are better identification of individual needs and better collaboration between palliative and neurological services. Can the Minister assure me that she will look at this? There is a great inequity in access to palliative care. I declare my interest as a chair of the Scottish Government’s neurological advisory committee.

[Baroness Merron (Lab)]

The noble Baroness is quite right to raise this, and I can give her that assurance. She raises the point about identification of people with specific needs. I am interested to see that there are some very good examples of local good practice—for example, in Dorset, where they have proactively gone out to identify who needs palliative and end-of-life care. By so doing, they have raised the percentage of the local population who should be receiving it. That is a model we will want to look at. With regard to those who have particular needs, as the noble Baroness describes, I think that model will be helpful too.

Covid-19 Inquiry

Baroness Fraser of Craigmaddie Excerpts

Tuesday 3rd September 2024 Lords Chamber

[Baroness Fraser of Craigmaddie (Con)]

My Lords, I am delighted to contribute to this debate on the resilience and preparedness of the United Kingdom. I take the point made by the noble Baroness, Lady Thornton, that this is only the first of a number of modules, but it came as no surprise to me that the module 1 report concluded that:

“Emergency planning generally failed to account sufficiently for the pre-existing health and societal inequalities and deprivation in society”,


and that there was

“a failure to engage appropriately with those who know their communities best, such as local authorities, the voluntary sector and community groups”.

I declare my interests as laid out in the register. I was at the time of the pandemic, and still am, the chief executive of Cerebral Palsy Scotland, as well as chair of the Scottish Government’s National Advisory Committee for Neurological Conditions. I have also given much written and verbal evidence to the Scottish Covid inquiry under the chairmanship of the honourable Lord Brailsford. I share the frustration of the noble Lord, Lord Browne of Ladyton, that politics got in the way of the Governments of Holyrood and Westminster working together, and I slightly despair that we need to have two separate Covid inquiries running at the same time. The conclusions drawn in this module by the noble and learned Baroness, Lady Hallett, resonate with my experience and the experience of people with cerebral palsy during the pandemic, and I will concentrate on that today.

Right from the very earliest days, cerebral palsy was cited by the UK and devolved Governments and in the media as being a specific condition that left you more at risk from Covid-19. This messaging, which was based at the start on very little clinical evidence, continued all the way through to the rollout of the vaccination programme, when people with CP were able to get their vaccinations early. However, it was coupled with the cessation of support services that this population relies on, which meant that people with CP and their families were left with considerable anxiety regarding what they should and could do to remain well.

In March 2020, with no consultation with disabled people themselves or the organisations that support them, all face-to-face services ceased. Community physiotherapy, occupational therapy and other AHP services were not deemed “essential”. Some adults with CP moved back to live with their sometimes rather elderly parents and family for lockdown, and some were too anxious about infection to allow carers into their home.

The inquiry’s report says that there was

“a failure to appreciate the full extent of the impact of government measures and long-term risks”

from the Covid pandemic

“on … those with poor health or other vulnerabilities”.

These groups were already vulnerable, and yet what was essential to keep them well was denied them because such services were not deemed essential by those who were making the decisions. This reduction in services, together with restrictions that left many struggling to manage their condition, caused isolation and increased anxiety that we are still struggling to recover from today—over four years later. Medication, for example, was seen as a priority but physical therapy, occupational therapy or speech and language services were not, yet for people with CP, these are as vital to access on a regular basis as medication is for other conditions.

The closure of schools in particular had an extremely detrimental effect not only on children with CP but on their families. Anxiety levels about the risks to children with CP were such that many families did not feel confident to send their child into school even if a place was available. However, school time for these children is more than just about providing education. It is where therapy appointments happen, it benefits mental health and well-being through opportunities for social interaction, and it provides vital respite for family carers. Many children with CP have one-to-one support for their learning in school, yet families were left to cope unsupported with the demands of physical care needs in addition to educational needs. Many parents also had to juggle the requirements of non-disabled siblings or potentially trying to work from home. It is unsurprising that this stress had specific physical and mental health consequences.

The problems caused by the lack of understanding of people with CP were starkly illustrated by the implementation of shielding. Despite the Scottish Government reaching out to organisations such as Cerebral Palsy Scotland, there was no coherent approach. Due to a chronic lack of data on this population, people with CP could not be identified centrally, so many approached their local GP or paediatrician, allied health professionals or social workers to ask to be shielded, and professionals would err on the side of caution and suggest that people did shield without much thought for the consequences. Many more people with CP chose to voluntarily class themselves as “shielding” compared with the actual numbers who received an official letter. Those people who received an official letter tended also to have other conditions, which meant that they were possibly more vulnerable to Covid as a result of comorbidities rather than CP, and they were certainly more visible to health professionals and easier to identify. However, it added to the picture of inconsistency, and we know that people fell through the gaps.

People did not understand the logic of who was or was not meant to shield, or where to go or who to ask for trusted information. The picture reported to Cerebral Palsy Scotland illustrated many variations across the country and that health and social care professionals, as well as people themselves, did not feel equipped to take decisions about their own level of risk.

I commend particularly the inquiry report’s recommendation 5 on improving data and research for future pandemics. I was glad to hear the noble Baroness, Lady Merron, address in her opening remarks actions that the Government wish to take on this. People with cerebral palsy are invisible to service providers. The lack of a cerebral palsy register meant that, although they were very visibly classed as vulnerable, health and care and educational professionals did not have adequate data to identify where these people were within their communities and, given the umbrella nature of the condition, it was impossible for them to identify who actually was vulnerable and provide them with adequate support, as opposed to those with milder CP, who could be reassured and who could have been at no greater risk from Covid than the rest of the population.

I hope the Government will take the inquiry’s recommendations seriously and will work in partnership with the devolved Administrations to improve our data and planning, and thus our resilience. Unfortunately, people with cerebral palsy remain invisible today, and I would welcome the opportunity to work with the Minister and her team to ensure that policymakers, service providers and professionals can identify this population, so that never again will decisions about them be made in isolation, with such devastating long- term consequences.

NHS: Neurology Care

Baroness Fraser of Craigmaddie Excerpts

Monday 26th February 2024 Lords Chamber

[Lord Markham (Con)]

I thank the noble Lord. I had the opportunity to join the Neurology Alliance forum today, which was quite timely. I think its approach is entirely right in looking at what we can do to help people get on with an active life and back into the workforce, understanding that the economic impact of that is key. We have set up the neuroscience transformation programme, which the Neurology Alliance is on board with, which we think will tackle many of the issues that the noble Lord mentions.

[Baroness Fraser of Craigmaddie (Con)]

My Lords, I declare an interest as chair of the Scottish Government’s advisory committee on neurological conditions and as chief executive of Cerebral Palsy Scotland. People with neurological conditions are faced with navigating a very complicated maze of services straddling primary care, secondary care and social care. Some conditions have well-defined pathways; many other conditions, such as cerebral palsy, do not. If the Government are not going to look at an overall neurological strategy such as the one that we have in Scotland, what practical steps will they take to help people with neurological conditions navigate these confusing services, so that they get the right support at the right time?

[Lord Markham (Con)]

My noble friend is correct. The important step towards this was our appointment of the first national clinical director of neurology over the last year. The task force put out a progressive neurological conditions toolkit which sets out the pathways exactly as my noble friend mentions. It shows the treatments for over 600 conditions. This is a complex area so it is vital that the pathways are understood in each area and patients can understand how to navigate them.

Adult Social Care (Adult Social Care Committee Report)

Baroness Fraser of Craigmaddie Excerpts

Monday 16th October 2023 Lords Chamber

[Baroness Fraser of Craigmaddie (Con)]

My Lords, I was privileged to sit on the Adult Social Care Committee, which was so ably and sensitively chaired by the noble Baroness, Lady Andrews. I thank her for her comprehensive introduction to the debate.

I found it incredibly hard to think of what to say; it has all been said many times. We know what needs to be done. I pay tribute to my noble friend the Minister for his work and perseverance in this area, because I know that he knows what needs to be done and that he understands this sector, but we do not seem to be moving the dial one iota for people.

I travelled down from Scotland this morning, and our experience of attempts to create a national care service is not one I wish to recommend to the House. So far, its development has cost £1.26 million in engagement, £1.38 million in staff costs, an accountability agreement with local authorities and the NHS and an inadequate skeleton Bill that has been delayed three times. As Scotland illustrates, the top-down approach does not work. It is expensive and futile and, despite all the time and money spent on it, not one person’s care in Scotland has been improved.

For me, the Government’s People at the Heart of Care is based on very sound conservative principles, but we will not enable people to have choice and control unless plans are backed up by funding and action. Our committee’s report illustrates how carers, paid and unpaid, are key to ensuring that those who draw on care can indeed lead a “gloriously ordinary life”.

We heard of the huge challenges experienced by people in being able to find good PAs. The Government acknowledged in their response to the report that personal assistants are “invaluable”, yet this crucial and apparently valued workforce is unregulated, too often paid only the minimum wage, on zero-hours contracts and not funded enough to be employed full-time, and has no access to ongoing training and no recognised qualifications.

The Government have promised to improve career pathways and opportunities for progression within the adult social care workforce, and have identified £250 million to do this. Can the Minister give us any details on how this is to be spent? How could it help more people access PAs? I have encouraged the Minister before to look at the charity ENABLE’s PA model in Scotland, and do so again to support this.

As the noble Baroness, Lady Andrews, said, unpaid carers carry a huge burden but are largely unseen, unappreciated and ignored. The Minister will not be surprised to hear me calling yet again for improved identification. The discrepancy in the estimated number of unpaid carers of between 2.4 million and 6.5 million in our report illustrates how woeful our ability to identify this key group currently is.

In May the Government updated their road map for better data for adult social care, which recognises that while a variety of various sources capture some information on unpaid carers, they lack consistency and coverage. As I understand it, a new regular survey focused on unpaid carers is to be created. Can the Minister give us any update on these plans?

The Government’s vision that data should be collected once and shared with those who need it is one of those common-sense statements that sound really simple, but that I know will be very difficult to achieve and implement. Who will social care data be shared with? Will people needing care and their unpaid carers have access to their data? There are examples given, such as GP records being shared with home care managers and authorised social care staff, but who is classed as “authorised” in this context?

My worry is that social care provision is still far too far down the priority list. At the recent party conferences, neither the Prime Minister nor the leader of the Opposition spent any time discussing social care. Even the Minister for Social Care spoke about integrated healthcare teams and community health services, not social care. She spoke about how we continue to look at health and care through the prism of the NHS, saying:

“It often feels like the acute hospital is like the sun in the NHS solar system with everything else spinning round it. But it doesn’t have to be that way”.


She is right. I agree with her, but until we turn the telescope around and focus on enabling people to lead a gloriously ordinary life, social care will always lose out.

National Health Service: Major Conditions Strategy

Baroness Fraser of Craigmaddie Excerpts

Monday 18th September 2023 Lords Chamber

[Lord Markham (Con)]

Absolutely. The Government, and in particular my noble and learned friend Lord Bellamy on behalf of the whole MoJ team, fully support the noble Viscount’s remarks on the Powers of Attorney Bill and warmly thank him, Stephen Metcalfe MP and all the others for their efforts on the Bill.

[Baroness Fraser of Craigmaddie (Con)]

My Lords, I congratulate the Minister on concentrating on the importance of person-centred care, particularly for people with long-term conditions. I declare an interest as chief executive of Cerebral Palsy Scotland. Cerebral palsy is a good example of this, because we actually have very good NICE guidelines for the treatment of adults with CP but there seems to be nothing we can do to ensure that integrated care boards around the country follow those guidelines. Can the Minister explain why?

[Lord Markham (Con)]

My noble friend is absolutely correct, in that we are setting out the whole emphasis of what we are trying to do here. It is really ingrained in those pathways. It is about culture and behaviour as a whole, rather than a silo-based scheme, looking at the whole patient. Once we have got those pathways set up properly, it is Ministers’ job—I have mentioned before that we each look after six or seven ICBs—to hold them to account and make sure they are following those pathways.

Mental Health Services: Huntington’s Disease

Baroness Fraser of Craigmaddie Excerpts

Monday 12th June 2023 Lords Chamber

[Lord Markham (Con)]

The plan with the neuroscience transformation programme is to give that pathway to every ICS, which it should follow and commission to, to make sure that specific treatment is in place. It is a complex area, as we all know. Again, as I understand it, there are more than 7,000 rare conditions. I want to be open about the ability to put in place a specific individual care co-ordinator for every one of those, but we need to make sure that ICSs have enough skills in their locker—for want of a better word—so that they can recognise the situations and make sure they are commissioning to the plan.

[Baroness Fraser of Craigmaddie (Con)]

My Lords, I declare my interests as chair of the Scottish Government’s neurological advisory committee and a trustee of the Neurological Alliance of Scotland. This is an issue not just for people with Huntington’s disease but for people with other neurodegenerative conditions, such as Parkinson’s. NICE standards for people with Parkinson’s recommend the prescription of Clozapine for hallucinations or delusions, but only psychiatrists are enabled to prescribe it; therefore, people with Parkinson’s do not have access to this treatment because neurologists cannot prescribe it. Will the Minister look at this? Maybe this is one way to ensure that people get the treatment they need.

[Lord Markham (Con)]

Yes, I think is probably the best answer I can give in the circumstances. I will absolutely do that and will write to my noble friend.

Adult Social Care: Challenge Procedures

Baroness Fraser of Craigmaddie Excerpts

Wednesday 19th April 2023 Lords Chamber

[Lord Markham (Con)]

First, I take issue with the inadequacy comment. Some 89% of people expressed a high level of satisfaction with the social care provided, which, although not 100%, is pretty good, as I think everyone would agree. As I said, the workplace plan has been drafted. I am afraid I cannot give an exact date of publication—I believe there are local purdah issues now—but I can say that it will be soon.

[Baroness Fraser of Craigmaddie (Con)]

My Lords, one of the things this House has heard about many times is our reliance on unpaid carers and the important role they play in helping people who draw on adult social care to navigate the system. The 2014 Care Act put a duty on local authorities to identify unpaid carers, but that is not happening. What can the Government do to identify unpaid carers, so that we can support them more readily?

[Lord Markham (Con)]

I thank my noble friend for that question. The Government absolutely recognise the role that unpaid carers play—I have fulfilled such a role myself for a number of years—and it something we are working towards. We have introduced the leave provisions and a certain level of payments for them; that may be modest but it is a step in the right direction. Again, the whole idea of getting the CQC in this space is that it can start monitoring local authority provision and ensure that it is identifying unpaid carers, among other things.

Social Care

Baroness Fraser of Craigmaddie Excerpts

Thursday 30th March 2023 Lords Chamber

[Baroness Fraser of Craigmaddie (Con)]

My Lords, I, too, start by thanking the noble Baroness, Lady Andrews, for securing this debate today, for her very sensitive chairing of the Adult Social Care Committee, on which I was privileged to serve, and for her tireless commitment to improving the landscape of care, which is a real conundrum of our time. We must “reimagine” it, as the most reverend Primate urges, and, while many have claimed that they will fix it, it remains unfixed.

No one chooses to be cared for, or to become an unpaid carer. If the noble Lord, Lord Laming, was here, he would tell us that either could happen to any one of us at any time. But, as our report points out, both are invisible. This invisibility leads to confusion around what social care is and who delivers it. While the NHS is there “from cradle to grave”, individuals who do not currently need care cannot imagine they ever will and therefore fail to plan for such a time.

I draw your Lordships’ attention to my interests as laid out in the register, in particular my work as chief executive of Cerebral Palsy Scotland and also with people with neurological conditions. My lived experience says that we must not view social care through the prism of the NHS. Many of the people I work with are neither ill nor old; they just need help to be able to live what our committee’s report called

“a gloriously ordinary life”.

I know people who choose to study with the Open University and miss out on all those extracurricular experiences that I am sure many of us look back on with fond nostalgia, because they cannot be confident that they will be properly supported to get around campus and get to lectures like their contemporaries. I know parents who have to give up their own professional lives when their adult child leaves formal education because the system assumes that they will; and I know people who remain living with elderly parents because there is no suitable accommodation for people under the age of 65. Our committee heard from many witnesses who were not ill or old but could not get the right support. Worse than that, they were worried that, if they contacted their local authority for a review, the support they did have would be reduced.

For many of working age, what they want and need are good PAs, personal assistants. These are professional enablers who help you do what you want, whether it is getting to work, feeding you, taking you to the pub or, in a case highlighted to us during the course of our inquiry, enabling someone to pay their respects to Her Majesty Queen Elizabeth II at the gates of Balmoral—something that could never be assessed as an outcome by a local authority care package.

Yet there are not enough PAs. You are really stuck if your PA is ill or does not turn up, and the challenges of becoming an employer and dealing with recruitment, PAYE and pensions too often just puts people off. We heard evidence in our committee from Enable Scotland, a charity which works with local authorities across Scotland delivering their PA model of care, where the charity deals with all of those employer issues and provides a personalised service to people who want it. I encourage the Minister to look at this model.

For too many, as we have heard, contact with social care services is forged in crisis and fraught with difficulty. The providers of last resort are family and friends, who are thrust into roles they neither sought nor are supported to fulfil as unpaid carers. I believe the Minister himself has been a carer and appreciates the challenges. He has called unpaid carers

“the backbone of the system”—[Official Report, 20/2/23; col. 1434.],

but I am afraid that, despite warm words, unpaid carers continue to be taken for granted.

As the noble Baroness, Lady Andrews, pointed out, carer’s allowance is the least generous benefit and considerably less than the minimum wage. There is little respite, little support and severe financial implications, but too many families feel they have no other options.

If we do nothing else in the Government’s forthcoming social care plan and future work, I urge the Minister to improve identification of unpaid carers, including children who care. Self-identification is not working and neither are the formal systems set out in the Care Act. There are still so many gaps. We heard about the No Wrong Door initiative successfully employed in Liverpool. How can the Minister ensure initiatives such as this are more widely adopted?

As others, particularly my noble friend Lady Shepherd, have said, over the years, Ministers have been given a veritable shopping list of solutions. I hope these two reports and our debate today can add to the impetus the Minister needs within government, because the last thing people who rely on care want is yet another plan that fails to be backed up with action.

Adult Social Care

Baroness Fraser of Craigmaddie Excerpts

Monday 20th February 2023 Lords Chamber

[Lord Markham (Con)]

Again, I would like to say that the big increases in funding—the 20% increase that we are talking about in two years’ time—are very much an acknowledgement that there is a demographic issue here, where more and more people are going to be coming into this situation. That is why we are putting those plans in place and working on the workforce; we are already seeing thousands of people being recruited every month to assist with capacity in the system. So we are putting in place the plans to address that.

[Baroness Fraser of Craigmaddie (Con)]

My Lords, one of the issues identified in the report of the Adult Social Care Committee, on which I had the privilege to serve with the noble Lord, Lord Laming, was the invisibility of unpaid carers. What are the Government doing to support services to identify unpaid carers, and what more targeted support can we give this vital population—more than just one week of carer’s leave?

[Lord Markham (Con)]

Again, as I said before, they are the backbone of the system; some of my personal experience attests to that. So I hope that what we were talking about will be seen as the start, rather than the end, of what we are trying to do. But we recognise that it is a decent start, because this issue has been out there for many years and we are starting to address it. Obviously, forums such as these make sure that it is something that more people are aware of. I accept at the same time that a week a year is a start in terms of a break; it is not the end of the situation.

Neurological Conditions

Baroness Fraser of Craigmaddie Excerpts

Thursday 9th June 2022 Grand Committee

[Baroness Fraser of Craigmaddie (Con)]

I thank the noble Lord, Lord Dubs, for securing this important debate. It is, unfortunately, late on a Thursday afternoon, but as he said, it coincides with the publication of the joint patient experience survey, undertaken for the first time by all four Neurological Alliances from across the UK. I declare lots of interests: I am a trustee of the Neurological Alliance of Scotland, I am chief executive of Cerebral Palsy Scotland and I chair the Scottish Government’s National Advisory Committee for Neurological Conditions.

As part of that, this debate and survey took me back to work undertaken in 2018 with the Scottish burden of disease study, which highlighted not only the invisibility of neurological conditions but, to use the not very good language of the study, the “burden” of living with a long-term, complex condition, and the burden that already places on health and care services. This population live for a long time and are already using health and care services, but are invisible. Improvements are therefore difficult to make because of that invisibility. The conclusions and recommendations of the Neurological Alliance survey illustrate how services are patchy and fragmented, but they give us a barometer for where to concentrate action. I have three areas for action that I would like to highlight.

First, we have to better understand prevalence. Data on numbers of all neurological conditions remains woeful. The data we do have is mostly estimates. We seriously underestimate prevalence due to the inaccurate and inconsistent way that neurological conditions are recorded across all healthcare settings. We have to look at the system of coding: how do we make it simpler?

At Cerebral Palsy Scotland, we have campaigned for the development of a national cerebral palsy register, building on existing work from Queen’s University Belfast, supported by the Northern Ireland Government, and work undertaken by the Welsh Government. Working on the principle that if you are not counted you do not count, part of ensuring better services is to prioritise reliable data in order to plan not only for future services but for future workforce needs.

Secondly, we have to deliver seamless care between the different parts of the system and to take a more holistic view of the workforce. It is important to look beyond neurologists. People with neurological conditions come into the NHS through numerous routes. That is part of the problem. The role of the consultant neurologist is to exclude conditions and to provide a diagnosis. It is important that this should be achieved as quickly and as efficiently as possible. However, since people with neurological conditions can live for many years post a diagnosis, the important question is: who will deliver their care? It will not be the neurologist.

As the noble Lord, Lord Dubs, outlined, clinical nurse specialists are key to managing care for some conditions, MS being one of them, but sadly too many other conditions do not have clinical nurse specialists and are therefore left out. We need to be more imaginative about roles and responsibilities in multidisciplinary teams and in planning for future workforce needs, and perhaps to work more collaboratively with other areas, such as MSK and stroke services.

The majority of health and care services required by this population are provided by primary and community care services and by AHPs. People with cerebral palsy, for example, rely on regular access to physiotherapy to prevent further deterioration and to stay well, but access to neuro physios and other rehabilitation services is completely inadequate and comes nowhere near the standards and guidelines set by NICE for adults with CP. It is the same for many other neurological conditions.

The Question refers to services covering the whole of health and care. As the noble Lord, Lord Dubs, also mentioned, this is Carers Week. Carers are an integral part of this workforce too. But I believe that anybody—health, care or social workers—who has any input into delivering care for someone with a varied and complex condition must have access to information and training about that condition. Far too often, it is left to the third sector to pick it up in a piecemeal and underfunded way that cannot hope to reach all those in need.

Thirdly, support for mental health needs to be provided at diagnosis. It has to be an integral part of condition management for children and adults. Too many people, children in particular, report that their mental health needs are not being met at all. If raised with professionals, their concerns are dismissed as being just a part of their condition that they have to live with. There are, in theory, a range of mental health services that can be accessed by people with neurological conditions but, again, there are huge variations in equity of access, both geographically but also for the different conditions.

To address the issues highlighted in the Neurological Alliance’s survey, we require leadership and vision. Will the Minister therefore commit not only to taking up the challenge of the noble Lord, Lord Dubs, but to developing an overall strategy to support people with neurological conditions? In Scotland, we already have the framework for action for neurological care and support, which I was involved in creating. The ambition must be that health and care services support people with neurological conditions to live well on their own terms, with access to the right person at the right time and in the right place. This is essential. I look forward to supporting the Government in achieving this ambition.