Hospices: Funding

Baroness Wheeler Excerpts

Thursday 24th October 2024 Lords Chamber

[Lord McColl of Dulwich (Con)]

My Lords, I, too, thank my noble friend Lord Farmer for initiating this important debate. For most of my professional life, I have been associated with hospices such as St Christopher’s, the Mildmay in the East End of London, the Mildmay in Uganda and the Phyllis Tuckwell Hospice in Surrey. I have learned a lot working in these places.

I remember, for instance, a lady of 28 with an inoperable cancer of the throat. She was in pain and a lot of respiratory distress and needed relief from these symptoms. I explained to her that I could put a needle into her vein and titrate her with analgesics until all her symptoms had gone. She agreed to this. I gave her a surprisingly large dose of heroin, which not only did not kill her but relieved all her symptoms and gave her three weeks of symptom-free life. During that time, she was able with a clear mind to say goodbye to her friends and to tidy up all those loose ends. Some people accused me of hypocrisy, saying, “You’re really killing them and just saying that you’re relieving their pain”. Well, anyone who thinks they know what is in my mind has delusions of grandeur.

Cicely Saunders and I were contemporaries as medical students. Her work on relieving symptoms in hospices was very important indeed. She established without any doubt that the right way was to keep a constant level of analgesia in the blood rather than give patients doses only when they had the pain. If you do this, you require less of the analgesics overall and so the patients are more awake and able to enjoy life. That was a very important contribution. The present laws against euthanasia and assisted dying are like a huge dam preventing great enthusiasm for euthanasia and assisted dying. That dam can sometimes develop a crack for those who want to legalise euthanasia. Once you have a little crack in the dam, the whole thing can give way. Cicely Saunders’s work was an extremely important aspect of this.

As far as the funding of hospices is concerned—

[Baroness Wheeler (Lab)]

Can the noble Lord wind up, please? His three minutes are over.

[Lord McColl of Dulwich (Con)]

There is an urgent need for more funding, as has been said many times, and a partnership between government, charities and local authorities is required.

Homecare Medicines Services (Public Services Committee Report)

Baroness Wheeler Excerpts

Thursday 2nd May 2024 Lords Chamber

[Baroness Wheeler (Lab)]

I too congratulate my noble friend Lady Morris on her usual thoughtful, thorough and robust introduction to this excellent report. I commend the whole committee for shining a laser-like spotlight on such a vital service, upon which half a million people with chronic health conditions living at home depend. Homecare medicines services are some of many services provided to NHS patients that are not publicly well known or understood by the majority of people accessing the NHS, but, as we have heard, they provide and utilise huge NHS expertise and physical and financial resources—over £3 billion per year, as the Government now estimate.

The forensic, in-depth reviews that Lords and Commons committees undertake of such services—which range across NHS provision and underpin the importance of providing quality patient care and safety across the NHS as a whole—are an essential part of parliamentary scrutiny. Today, we have heard support and insight from other committee members across the House—I note my noble friend Lord Carter and the noble Lords, Lord Blencathra and Lord Shipley—and I welcome their perspectives and reinforcement of the committee’s work. I particularly thank the noble Lord, Lord Blencathra, for suggesting the topic in the first place.

The report provides a very thorough analysis of what homecare medicines services cover, their strengths and the significant problems encountered by service users, as well as the recommended ways forward to improve the provision of high-quality care to patients in their homes, which can reduce pressure on hospitals and other NHS services that have to pick up the pieces when delivery services fail.

Since the committee members have stressed that they are open to suggestions, I say that I personally hope that the committee can in the future undertake similar important work on other vital services that are often out of the spotlight. One such service is the continence service, which impacts across major conditions such as heart failure, stroke and dementia, costs the NHS similar sums of billions of pounds a year and involves home delivery of medicines and supplies to patients and hospitals. I realise that this is an issue for another day, so I will leave these thoughts with the committee.

The important starting point on homecare medicines services, heavily underlined by speakers today, is addressing accountability and who is responsible for the whole service. I welcome the DHSC’s and NHS England’s willingness, in the Government’s response to the committee, to recognise the disjointed complexity of the current system, which has largely evolved over the years without a coherent overview and strategy. I also welcome their recognition of the need to come to grips with how HMS operate today and move forward in the future.

Appointing the NHS England senior responsible officer responsible for HMS nationally is just the first step—a crucial point well reinforced today. When appointed, that senior officer, working with the national HMS committee, will face huge challenges identified by the committee and acknowledged in the Government’s response. These include developing consistent performance metrics and updating and rolling out new KPIs, with regular publication of performance data in standardised form to ensure that comparisons can be made and lead to better scrutiny, transparency and improved patient care. All these are promised for a report back to the committee in the summer.

The committee also underlined the importance of ensuring that homecare medicines services are part of, and included in, the NHS long-term workforce plan, or the social care equivalents when they are finally developed. It is astonishing that these two strategies do not include HMS. I look forward to the Minister telling us how this happened and the steps now being taken to address this significant oversight. How is the work on the vital information and data—so essential, as we heard, to assessing the patient experience and identifying the harm that delays, errors and misdeliveries cause patients—progressing under the desktop exercise, in advance of the promised summer report back to the committee on what data is available to assess patient harm?

The Government’s response also accepts that significant improvements must be made in the HMS procurement process to achieve value for money, in developing experts who understand the service and in the support offered to NHS trusts on drawing up and managing procurement contracts. My noble friend Lord Carter, as we know, has huge expertise in this area, working with NHS trusts on productivity, contract development and operational management across NHS trust operations. He has raised a number of key areas on this important aspect of the report, and I look forward to the Minister’s response, particularly on how we move forward towards operational excellence and integrated care records. The committee’s recommendation for government to start work now with the National Audit Office and the CMA to identify barriers to effective procurement makes sense in the light of the current disjointed and impossible-to-navigate system—another summer report-back item. Perhaps the Minister can explain why this work cannot begin now to help NHS England assess future options.

Today’s contributions have all drawn heavily on the crucial evidence of service failures from key patient groups. I join noble Lords in paying tribute to them and to the British Society for Rheumatology for its leading, co-ordinating role in gathering and presenting patients’ first-hand evidence to the committee. We have heard many examples today. The comments from two Cystic Fibrosis Trust respondents sum up what patients can experience. One says:

“It’s terrible … the times are a nightmare and missed deliveries can take ages to rearrange … it’s a horrible system”.


The other says that

“it is a massive burden and on top of everything else we need to do and have to deal with”.

The latter is a familiar sentiment from patients and their carers across many health and social care services.

As my noble friend Lady Morris underlined today, the committee fully acknowledges the “irreconcilable gulf” between the views of clinicians and service users and the leadership and governing bodies of the homecare sector on how well the service is performing. But it rightly underlines that it is

“persuaded by the weight of evidence from service users that there are real and serious problems in the sector”,

despite HMS being a complicated system with multiple variables. The example from the noble Lord, Lord Blencathra, regarding the delivery of his medicines and the testimony of the noble Lord, Lord Willis, clearly demonstrate this. Indeed, one of the most stark conclusions from the committee—the noble Lord, Lord Blencathra, referred to it, but it is worth repeating—is that:

“No one—not the Government, not NHS England, not patient groups, not regulators—knows how often, nor how seriously patients suffer harm from service failures in homecare”.


It is this and the complexity of the system that need to be urgently addressed. It is so important to have accurate and consistent performance data across providers and the services involved to measure the impact of poor performance on patients in the public domain. What are the expected timescales for the newly appointed senior HMS officer and the National Homecare Medicines Committee to develop a strategy and implementation plan for HMS, and how will service users be consulted and involved?

The failure of the regulatory model for homecare comes in for equally heavy criticism from the committee, which describes it as

“failing to ensure the safety and quality of patient care”;

having

“a limited understanding of the sector”

and “no appetite” to find out more; and having only “feeble”—indeed, “toothless”—enforcement action against providers, even where avoidable harm has occurred. The Government recognise that more work has to be done before deciding on undertaking the thematic review called for by the committee—that will be one more summer update to the committee.

Can the Minister confirm that meaningful discussions have begun between the CQC, the General Pharmaceutical Council and the MHRA? Are they just focused on identifying

“opportunities for strengthening collaboration, communication and transparency”,

as referred to in the Government’s response, or will they include more structural issues, including a leading regulator where providers are underperforming and overall responsibility for a patient complaints system? How will the role undertaken by the CQC for its—currently relatively few—HMS provider inspections be levelled up to the much tighter approach taken in inspecting small residential care homes?

With noble Lords’ indulgence, I refer lastly to a related but non-HMS issue: medicine blister packs for people living at home, which are assembled by pharmacies and either collected by patients and carers or delivered to their home. The Minister and I always seem to talk at cross-purposes about this. When I raise the issue, he stresses that they are not suitable for everyone, which I fully agree with, but I always emphasise how essential they are in the delivery of domiciliary personal and social care for people living in the community or in care homes. Care workers often administer these drugs to the client in their homes. This process ensures that the drugs are taken properly and safely and are not missed. Care staff can do this only using blister packs. They would not sort out the daily doses from multipacks, which I as a carer was recently offered. Our local Boots chemist, a large chemist, has stopped providing this essential service. Where it is not provided or where the chemist closes down, the task would again fall back to the carer. This is an important issue related to our discussions on HMS and it needs to be recognised as an essential part—where appropriate—of safe care in the community. I hope I have provided food for thought in the context of today’s debate.

Finally, this has been an excellent debate and I once again congratulate the committee on its searching report and very practical recommendations on ways forward. There has been a good start made on addressing the key problems, and optimism, in the Chamber at least. But, as the British Society for Rheumatology has stressed, both NHS England and the DHSC still have a long way to go to demonstrate that they understand the scale of the problems that need to be tackled if HMS is to achieve its full potential.

Pandemic Preparedness

Baroness Wheeler Excerpts

Monday 15th April 2024 Lords Chamber

[Lord Markham (Con)]

We definitely look to work closely with our colleagues, and I have spoken to my Health Minister counterparts on this. One of the lessons from the pandemic was that you also need to have your own capability. The work we have done on the100-day mission, and the strategic relationship we have entered into with Moderna—which can develop vaccines in as little as four to six weeks to answer some of those unknowns—is very powerful.

[Baroness Wheeler (Lab)]

My Lords, it is now two years since the UK Health Security Agency replaced Public Health England. As we await the Science and Technology Committee’s report on the threat caused by zoonotic diseases such as Covid, avian flu and Ebola, can the Minister update the House on the progress the agency is making in building resilience in these areas? It reported last year on global work on developing pandemic-fighting tools but not on the nitty-gritty needed to tackle underlying problems still hampering us, such as tackling widespread health inequalities, building systems for vaccine resistance and raising public awareness of the threats we all face.

[Lord Markham (Con)]

I thank the noble Baroness. The UKHSA has been working and there are four main areas we want to be responding on. First, there is the vaccine, and the 100-day mission is all about making sure that we have the vaccines quickly. We have 100 million vaccines prepositioned for flu and 250 million for other diseases. Secondly, there is the manufacturing scale-up. We have a fund in place so that we have UK domestic production capability to produce vaccines quickly. Thirdly, there is the stock of PPE, and, fourthly, there is the diagnostic capability. That is how the UK Health Security Agency is making sure we have all the bases covered.

Stroke Treatment

Baroness Wheeler Excerpts

Wednesday 27th March 2024 Lords Chamber

Asked by

[Baroness Wheeler]

To ask His Majesty’s Government what steps they are taking to improve treatment and care for those of working age who are affected by stroke.

[The Parliamentary Under-Secretary of State, Department of Health and Social Care (Lord Markham) (Con)]

The Government are taking three major steps to improve treatment and care for strokes: first, a whole series of prevention measures to help avoid a person having a stroke in the first place; secondly, an updated and evidence-based stroke care pathway using AI, the latest technology in stroke rehabilitation, to maximise the chances of recovery; and, thirdly, post-stroke rehabilitation care and support to maximise the chances of recovery.

[Baroness Wheeler (Lab)]

I thank the Minister. We know that one in four strokes happen to working-age people, and that it is also a leading cause of disability. Speech and physiotherapy support after stroke is therefore vital, because it helps recover key skills such as motor functions and cognitive ability, and it can be the difference between returning to work and not returning, or giving up altogether. With serious delays across the country in getting people to hospital and scanned, and in providing the speech and physiotherapy that is needed, and with chronic staff shortages across the country in hospital and community settings, good care is just not the reality for thousands of stroke sufferers. Some 40,000 people missed out last year on essential six-month, post-stroke reviews. When will the up and coming major conditions strategy be published? How will it specifically support effective stroke rehabilitation and recovery, and what timescales will be set for that?

[Lord Markham (Con)]

I thank the noble Baroness for her tireless work in this area. As she quite rightly points out, aftercare and rehabilitation is the vital third leg of the three-step process I spoke about. In the major conditions strategy we talk about how we are basing it on a national model for an integrated stroke care service, based around personalised, wraparound care, for as long as is needed, with reviews every six months. I have seen some fantastic examples when I have been out and about, such as in Royal Berkshire and Leighton. The proof of the pudding is in the results; we have seen the number of people who are achieving a full recovery increase from 16% to 48%. That is the target we are going after.

Sodium Valproate and Pelvic Mesh

Baroness Wheeler Excerpts

Monday 25th March 2024 Lords Chamber

[Lord Markham (Con)]

Again, these are difficult areas. My understanding is that we are working from the conclusions of the expert working group in 2017, and its review of all the evidence was that it could not find a causal link between Primodos and the impact it had during pregnancy. This was again reviewed by the MHRA when more information was brought up in the last year. So I am afraid that, as we stand today, the evidence is not there that suggests that causal link.

[Baroness Wheeler (Lab)]

My Lords, the Patient Safety Commissioner’s report is all the more valuable because it is drawn from patients’ experiences, including physical, psychological and emotional impacts and their daily struggle with accessing health and other key services such as social security benefits and special educational needs support for the valproate-harmed children they are raising. What is being done to support mothers and families as they cope with the indecision and delay over the Government’s response to the commissioner and await the vital support they need?

[Lord Markham (Con)]

We have completed four of the initial recommendations in the report of my noble friend Lady Cumberlege, and another three are in process. The most important of those, to answer the noble Baroness’s question, is the setting up of these nine specialist centres which can provide the support needed, not just in terms of redress surgically or treatment-wise but in terms of the support that people need to help them cope with the issues.

NHS: Dementia Commission Report

Baroness Wheeler Excerpts

Thursday 22nd February 2024 Lords Chamber

Asked by

[Baroness Wheeler]

To ask His Majesty’s Government what actions they are taking in response to the NHS Innovation and Life Sciences Commission’s Dementia Commission: 2023 Report.

[The Parliamentary Under-Secretary of State, Department of Health and Social Care (Lord Markham) (Con) (Con)]

We welcome the Dementia Commission: 2023 Report and are taking steps to address each of the recommendations. The Government remain committed to improving dementia diagnosis rates and providing high-quality care and support following a diagnosis. The Government have committed to double funding for dementia research to £160 million per year by the end of 2024-25. We welcome all research that will help us to improve how we diagnose and care for people with living with dementia.

[Baroness Wheeler (Lab)]

My Lords, the commission’s wide-ranging and comprehensive report is very welcome, but it heavily reinforces the urgent need for radical change in the way we diagnose, treat and care for dementia patients and support their families and carers. To ensure timely, speeded-up diagnosis, the training of primary care practitioners in dementia-specific symptoms and diagnostic methods is crucial. What steps are the Government taking to strengthen general practice and community pharmacy in this regard so that individuals with dementia can receive appropriate care and support as early as possible?

[Lord Markham]

I thank the noble Baroness for this Question. As ever, I have found that one of the real strengths of being in this position is that the questioning here makes me explore an area. This has been another area which I have enjoyed and found fascinating. Early detection is absolutely key, and what I have been learning from that is that, yes, we need to arm primary care staff and a potentially vital front line in terms of primary care staff are opticians, because retinal scans are a really good way to early diagnose. Apparently, people more than ever will have a frequent eye check. I have pulled together a panel to understand this more, and I invite the noble Baroness and others so that we can look at the latest research and really understand this more.

Care of Critically Ill Children

Baroness Wheeler Excerpts

Monday 29th January 2024 Lords Chamber

[Lord Markham (Con)]

The noble Baroness is correct: the number of young people with life-limiting conditions has gone up, from about 33,000 around 2001-02 to about 87,000 more recently. A lot of that is, conversely, good news in that we have more and more treatments that can keep these children alive for longer. Clearly, that requires the wraparound-type service that the noble Baroness is talking about. It is the responsibility of the ICBs to provide that; I will provide details of the progress of individual ones when we meet.

[Baroness Wheeler (Lab)]

My Lords, I emphasise that the task force recommended by Nuffield to oversee its key recommendations needs to get to work urgently. The family-focused research work with parents, including parent carers, about their experiences of shared decision-making with healthcare professionals on care and treatment, is vital, as is the comprehensive information and guidance for parents and staff that is called for across the 16 Nuffield recommendations. What timescales are the Government envisaging for this crucial work to commence and become operational, including guidance to clinical and ethical committees?

[Lord Markham (Con)]

My understanding, now that the task force composition has been set up, is that this will be arranged shortly. I completely agree with the noble Baroness that these are important, as well as often heart-wrenching, matters, so urgency is required. As I have said, good progress has been made in a number of areas. Already, the MoJ is setting up a round table on this. The regional conflict managers have been established. We have training courses online so that communication can improve. A lot is being done, and the task force will push that forward further.

Dementia

Baroness Wheeler Excerpts

Thursday 18th January 2024 Grand Committee

[Baroness Wheeler (Lab)]

My Lords, I thank the noble Baroness, Lady Browning, for this debate and for giving us the valuable—if nowhere near long enough —opportunity to shine a spotlight on many key issues that were at the heart of the scrutiny of the social care cap provisions of the Health and Care Act. In particular, I note its impact on people with dementia and our concerns about how NHS continuing healthcare operates arbitrarily with regard to people receiving free care or having to pay for it themselves, as well as how we move towards genuine parity between the NHS and social care and how good social care is vital for people with dementia and their carers. The current social care system is just not set up to meet these needs.

I have three points. First, on carers, the 60% of people with dementia drawing on care at home are being cared for by their spouses and relatives—mostly unpaid carers, as my noble friend Lady Pitkeathley again reminded us. As a carer myself, I meet many unpaid carers locally who are daily, for 24 hours, looking after loved ones at various stages of dementia, most of them with breaks of only a few hours a day or a week. The carer role is often rewarding, but it is also relentless for many. We urgently need a comprehensive national carers strategy, and I look forward to the Minister’s explanation of why we do not have one.

I turn, secondly, to care costs and the devastating impact of the financial costs for those living with dementia and their families—an average of £100,000 is spent by individuals over their lifetimes. Despite extensive modelling at the time of the 2022 Act showing that just 19% of people with dementia would reach the care cap, and despite the disproportionately detrimental impact on dementia sufferers in some of the poorest parts of the country, it would have made a start as part of a wider package of reforms that Labour argued for. Instead, the new reform money has been allocated largely to propping up the existing social care system. What action are the Government taking to tackle the staggering care costs faced by individuals with dementia in the absence of the care cap implementation? Can we please be updated on the Government’s plans for social care charging reform?

Thirdly, on NHS continuing care, the excellent Lords Library briefing reminds us of the CHC’s ill-defined primary health need assessment criteria and the huge inequities in the current system, particularly relating to the funding—or lack of funding—for care costs for dementia, either in the home or in care homes. The Alzheimer’s Society has pointed out that NHS England’s stats do not record diagnostic details, so there is no way of knowing how many people with dementia receive CHC or have been turned down. There is also no way of making assessments or comparisons from which transparent criteria could be developed. There are also huge geographical variations in the length of time taken to assess claims and handle appeals. Can the Minister update the House on what work is being undertaken to improve the transparency of CHC processes, procedures and decision-making, and also to address the urgent problem with assessing the eligibility for CHC of people with dementia?

Noble Lords’ priorities for dementia today have focused on urgent improvements to diagnostic rates, speeding up the introduction of vital modifying drugs to help slow down disease progression, investment in the dementia diagnostic infrastructure, and rebuilding the workforce and addressing the 152,000 vacancies in the adult social care workforce. This needs to be a fully comprehensive plan that is fully integrated with the NHS workforce plan if we are to avoid exacerbating the already chronic social care workforce crisis that we have.

Care Home Staffing

Baroness Wheeler Excerpts

Thursday 18th January 2024 Lords Chamber

[Baroness Wheeler (Lab)]

My Lords, the Minister told the House on Tuesday that hospital discharges have recently been reduced by 10%. However, he knows that this figure goes up and down as some people leave hospital while more come in at the other end, and it depends on which period of time is measured. From July to November last year there was in fact a steady rise, so we need to be specific about dates when we talk about making progress. On the care settings that patients are being discharged to—care homes—how are the Government keeping track of how the extra funding allocated to deal with chronic local staff shortages has supported the discharge process? Will it continue in the longer term?

[Lord Markham (Con)]

The noble Baroness is correct that the numbers are a result of flow. We are seeing thousands more people hospitalised through A&E, so the fact that we have managed to reduce the back end indicates a positive way forward. To measure precisely what the noble Baroness asked about, we have now set up a kind of flight control system for each integrated care board, as I have mentioned, which looks at data across the system to monitor the number of hospital beds and places needed on a case-by-case basis. The noble Baroness is absolutely correct that having that data is key.

Adult Social Care: Staffing

Baroness Wheeler Excerpts

Tuesday 12th December 2023 Lords Chamber

[Lord Markham (Con)]

I will absolutely clarify the number to the noble Lord in writing. It is of course a range, according to different local authorities, but I think we would all agree that it is a level that, as a percentage, is too high.

[Baroness Wheeler (Lab)]

The Nuffield Trust has called the NAO findings a

“damning indictment of the Government’s progress towards delivering social care change”.

To follow on from my noble friend’s question, the NAO points out that only 7.5% of the much vaunted £265 million allocated by the Government to addressing social care staff shortages and recruitment for 2023-35 has actually been spent, heavily impacted by the DHSC’s staff recruitment freeze. What specific actions are the Government taking to address this and ensure that the money they say is there is actually paid out?

[Lord Markham (Con)]

There were five parts to the programme of reforms mentioned and the £265 million. There was international recruitment, which we have done; it has worked well, and we need to continue doing that. The second part was a volunteer programme, which, again, we have done and it is working well. Thirdly, there were digital skills passports, so that staff could swap from place to place and take their qualifications with them; we have done that. The two other things will take longer. The care workforce pathway is out for consultation. It will mean that people can have a long- term qualification that can get them into other professions as well, such as nursing. Lastly, there is the care certificate qualification. That takes time. Everyone knows that, for that qualification to be meaningful, it will take time to set it up. That is the key expense item. The digital platform is going to be launched next June, so it will be rolling out from there.