Hospices: Funding

Baroness Finlay of Llandaff Excerpts

Thursday 24th October 2024 Lords Chamber

[Baroness Finlay of Llandaff (CB)]

My Lords, I am grateful to the noble Lord, Lord Farmer, and I declare all my interests in relation to hospices and palliative care, especially in Wales.

In 2008, the Welsh Government Health Minister Edwina Hart commissioned a strategy for palliative care. That report recommended that there must be fair access to specialist palliative care as a core service, available at all times, wherever the patient is, with patient information. I had the privilege of being asked to lead this work, and I had a budget of just over £2 per head of population. Together with my colleague, Dr Andy Fowell—who, tragically, died recently in a cycling accident—we created a funding formula to plug gaps and move specialist medical staff on to NHS contracts to ensure that they could integrate with oncology, surgery, anaesthesia, emergency departments, and so on. We stipulated a minimum number of actual or virtual beds for a population, and minimum staffing levels of specialist care in the community and in-hospital support teams. We set quality standards for rapid response to referrals, stimulated research and ensured education and training. I pay tribute to my colleague Dr Robert Twycross, who died just a few days ago. He was at Oxford and he was one of the great pioneers in research and education. The strategy has driven patient-centred care that meets the needs of every person and their family, especially when children are facing bereavement.

With encouragement, my wonderful colleagues moved on to seven-day pooled rotas to cover nights, weekends and bank holidays. As a colleague said, “We got rid of frantic Fridays and mad Mondays”. Our specialist nurses realised how many crises at nights and weekends could be intercepted when working a weekend or a bank holiday. Work with pharmacists and paramedics is improving access to just-in-case medication and care. For many years, through the Marie Curie Hospice, we have run a 24-hour all-Wales helpline for any health or care professional to get advice on a difficult situation.

In Wales, we created a floor—a minimum—but, of course, it is not enough and we still have workforce gaps, although Welsh Ministers have been unfailingly supportive of hospices and palliative care teams in Wales, despite competing demands, financing that becomes difficult and provision that is especially hard in remote and rural areas.

Research has repeatedly shown that good care costs less than bad care. No one should be told that there is nothing more that can be done. Seeking help and advice from colleagues, and being humble enough to questioningly review a situation, can find solutions to make each day better, accepting the inevitability of death for us all. Will the Government look at the Welsh data to comprehensively review the whole model of such services in England, to ensure that people’s needs are better met and hospices can once again flourish?

NHS Hospitals: Apheresis

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Wednesday 9th October 2024 Lords Chamber

[Baroness Merron (Lab)]

I assure the noble Baroness that we are more than factoring it in. We are totally committed to working to support those with sickle cell, and thalassaemia. There is ongoing work to provide the very best possible care, including boosting the number of blood donors, which is vital in improving clinical pathways and delivering treatments. There is a treatment, as I am sure the noble Baroness is aware, called Casgevy, which requires apheresis as part of the process. It is being evaluated by NICE for the treatment of thalassaemia and it is also being evaluated for sickle cell. I hope all those things will bring great benefits.

[Baroness Finlay of Llandaff (CB)]

My Lords, I am grateful to the Minister for highlighting that we are a leader across Europe with our services, but only 50% of the country is covered. Can she assure us that in all reviews of the NHS, consideration will be given to centrally commissioned, highly specialised services such as this, rather than relying on local commissioning, that the workforce plan will recognise that highly skilled nurses are needed to undertake this treatment, and that that needs to be factored in? The numbers are small but the skills are enormous.

[Baroness Merron (Lab)]

What the noble Baroness says is very true and I certainly can give the assurances she seeks.

Bread and Flour Regulations 1998

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Wednesday 11th September 2024 Lords Chamber

[Baroness Merron (Lab)]

I certainly hear the very welcome points that the noble Lord makes. As we progress, this will make us the first European country to mandate folic acid fortification of non-wholemeal flour. While some European countries, including Ireland, have voluntary fortification, mandatory fortification is not the case. I and my ministerial colleagues are keen to be in this position.

[Baroness Finlay of Llandaff (CB)]

I am grateful to and congratulate the Minister on her perseverance on this issue and on decreasing neural tube defects. Can she also ensure that products are appropriately labelled with warnings that they are not fortified and that any woman who might become pregnant should take additional folic acid supplementation? Without that, we will not tackle the ongoing problem of neural tube defects. I do have a concern that there is inappropriate fear over toxicity, given that in 1991 there was a very good randomised controlled study. People were divided into groups, given fairly high doses, including with multiple vitamins, and compared with those on a placebo. There were no adverse neurological or other effects.

[Baroness Merron (Lab)]

I am grateful for the noble Baroness’s contribution and can reassure your Lordships’ House, and anyone else who may be concerned, that, as noble Lords have said, this has been gone through over many decades. Safety is paramount. On products that are non-fortified, I will have to look into this, but for those that are fortified, there will be a transition period for industry because the equivalent of some 11 million loaves of bread are sold in the UK every day but only 65% of the flour used in their manufacture is produced in the UK. We have to look at this huge diversity of food products, including biscuits and cakes, and where it is a food ingredient in ready meals and soups. It is quite an undertaking, but your Lordships’ House can be assured that we are on it.

Government Policy on Health

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Tuesday 10th September 2024 Lords Chamber

[Baroness Merron (Lab)]

My noble friend makes an important distinction, and I would certainly share that view. It is worth reminding your Lordships’ House that ministerial meetings that are attended by third parties are declared in a quarterly transparency publication in the established way. Of course, this will be done. I can tell your Lordships’ House that I had a meeting with the right honourable Alan Milburn, and it was very useful.

[Baroness Finlay of Llandaff (CB)]

My Lords, I should declare an interest because I was on the Times Health Commission. We took evidence from a wide range of people, including the person mentioned. Can the Minister provide assurances that, whenever people are consulted, they are routinely asked to declare their interests; that any declaration of interest is repeated not only at the first meeting but whenever other people are present so that it is well known; that the consultation goes widely; and that there is no overreliance on a small number of people? We at the Times Health Commission found that, by consulting widely, we were able to hear very conflicting views, which was helpful and formative.

[Baroness Merron (Lab)]

I thank the noble Baroness for sharing her experience of consulting widely. It is certainly entirely legitimate for government departments to do just that. However, those who do not have a formal role are not required to declare interests; it is different for those who have a formal role. Requiring them to do so would mean, for example, us sending forms in advance to Cancer Research UK before it comes in to talk to us about cancer and to assist us. Would we want that? We would not. Of course, where there is a formal role, we absolutely do that.

It is probably worth saying that a particularly high-profile invitation went from the Secretary of State to the noble Lord, Lord Darzi. He will report shortly on the true state of the National Health Service. He does not have a specific role in the department but he has been invited by the Secretary of State to assist; I believe that he will assist both your Lordships’ House and the other place.

Support for Infants and Parents etc (Information) Bill [HL]

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2nd reading
Friday 6th September 2024 Lords Chamber

[Baroness Finlay of Llandaff (CB)]

My Lords, I am most grateful to the noble Lord, Lord Farmer, for having brought this measure back to the House and indeed for all the work that he has done in looking at the investment in new life for the next generation.

Clause 5 is particularly helpful by defining what an infant is and being clear that the first 1,001 days of life are particularly important. Of course, there is the time before the child is born as well, before that clock starts ticking, which is very important. As the noble Lord, Lord Blunkett, has said, this builds on communities. We live in an increasingly fragmented society, and many women are pregnant a very long way away from any relatives or even friends. They may find themselves in a community that they do not know well, and those community attachments and links can be established if there is somewhere to go.

Another important point, which I will cover as I go through, is that this will take some of the burden away from the NHS. The panicking parent who does not know what to do phones 111 and gives a bizarre description of what is going on and then ends up in an emergency department. That is not an appropriate place for a panicking young mum, particularly one with feeding difficulties.

I am most grateful to the noble Baroness, Lady Miller of Chilthorne Domer, for covering breastfeeding, so I will not repeat the very important points that she has made. Many women think that they will try breastfeeding, they start and then they give up. There are huge pressures to give up, as if it is somehow better or more fashionable to use formula when, actually, the convenience of breastfeeding, particularly in the long term or if you are travelling and going places, is really never advocated.

Mothers are not told what they are doing well; they keep on being given advice as to what they should do differently. Certainly, for myself, the most helpful thing when I was breastfeeding was my mother-in-law saying, “You are doing really well, dear.” That was very reinforcing, because I was worried about what I was doing. A friend of mine just said, “Why don’t you put the baby in a different position, on a cushion under your arm, and you’ll be more comfortable.” Those were really simple things, but the thing about that peer support is that it needs to be available out of hours, at nights and weekends—somebody you can contact.

Concern has been expressed—I am grateful to the NSPCC for its briefing—about messaging and the problem with the digital divide. As the noble Lord, Lord Blunkett, said, people have mobile phones and we are very used to getting advertising messages on the mobile, or messages about NHS appointments, so once a woman is known to be pregnant, some of the messaging can just go in short messages by mobile phone, with who to contact, where to contact them and where to go locally. This should not involve any great expenditure.

On hubs, the work done so far has already evaluated very well. On investment, the Sure Start programme has shown that individual educational outcomes, especially for disadvantaged and racially minoritised children, have seen a huge benefit. Those eligible for free school meals who grew up near a Sure Start centre outperformed their peers by three grades at GCSE, so this is a really long-term investment in society and in the future for these children.

Worryingly, a recent survey of over 1,000 expectant mums by the Parent-Infant Foundation found that 73% of women surveyed said the information and advice they had about bonding with their baby was not given throughout their pregnancy, and that 71% would have liked much more support to help them bond with their baby. Yet this is a crucial time. We know that perinatal mental illness is a real scourge: 27% of new mums end up with some mental health problem. That is a huge number, and we know that suicide is the leading cause of maternal deaths. We cannot ignore that distress and the need to do something about it in our communities.

There is also evidence that one in 10 fathers experience depression during the time of pregnancy or after a birth, and we know that that is a time of high risk of domestic abuse as well, both towards the mother and the new baby, and any other children in the family. There is evidence that the attachment, which can be enhanced by good support, of mums and dads to the unborn baby also has an effect on siblings and the emotional relationship between siblings. There is a real need to make sure that support is available right the way through so that, by strengthening our communities, this does become an investment for society.

I turn to financial investments. Insecure attachment to mothers costs one-third more than cases where children have secure attachments, and that amounts to an average difference of about £3,500 a year. The cost difference for insecure attachment to fathers is even more substantial, running at about £12,700 a year. Insecure attachment is fundamentally linked to an increase in antisocial behaviour, conduct disorders, violent offending, drug misuse, teenage parenthood and reliance on state benefits. The estimated cost in adulthood for typical conduct disorder cases in the UK is £260,000 per person—more than a quarter of a million pounds per person. This makes financial sense, quite apart from the emotional and societal impact.

I should declare that I chair the Commission on Alcohol Harms, and it would be remiss of me not to remind your Lordships that the UK is estimated to have the fourth highest rate of alcohol use during pregnancy in the world, with an estimated 41% using alcohol during pregnancy. All the evidence around foetal alcohol syndrome and all the harms that go along with alcohol intake is really powerful, but the messages are not getting through to the parents, and they are not accessing the support they need to tackle alcohol and drug abuse during early pregnancy. Research from the Alcohol Health Alliance UK indicates that one-third of people are unaware that it is safest not to drink while pregnant.

I hope that the Bill progresses and that we do not try to over-amend it, which might result in it not progressing. There may be some imperfections—we can always want something slightly better somewhere—but this is a really important initiative and we need to support it as it goes through, because all the evidence is that these programmes work for the child, for the parents, for the siblings and for the future of our society.

Integration of Primary and Community Care (Committee Report)

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Thursday 9th May 2024 Lords Chamber

[Baroness Finlay of Llandaff (CB)]

My Lords, I declare and update my interests as listed in our report, as I now chair the Bevan Commission in Wales. It was a pleasure to be on this committee, so ably chaired by the noble Baroness, Lady Pitkeathley. She kept our focus on the topic at hand and worked extremely hard when there were changes of personnel in the clerical staff supporting our committee.

I came to this very important inquiry with experience of having set up hospice services from scratch, where nurses and care assistants needed upskilling and where bringing everybody together, including clerical and reception staff, for open education sessions resulted in them being able to outreach into community services. We established integrated working. Each person knew what the other one could do, and people worked to the top of their game.

As a committee, we were very keen to explore ways to transform the patient experience and decrease demand on health and social care services. We were acutely aware that we should not incur expenditure nor suggest major reorganisation but should reduce the waste from inefficient practices, and that much can be done by different attitudes and approaches.

We were acutely aware that patients want continuity of care. They often feel pushed from pillar to post, not sure whom to contact or even how to contact someone whom they have seen previously. If they get past an answerphone, they find that they are repeating their story time and again, uncertain about who does what and endlessly waiting for the next appointment along a whole chain that feels like a disjointed slow relay. Our suggestion to put health and social care providers together as much as possible, sharing ongoing training, sharing premises and with access to each other’s records, is really at the heart of patients’ experience of integration.

Yet the government response is deeply disappointing. Rather than welcoming our recommendations to provide additional strengths to their plans towards integration—which are outlined in their response—it reads as if the Government are saying, “We are doing it all already”. Yet, time and again, we heard from services about how disjointed they are. We heard about the changes that need to happen to bring health and social care together under one roof in premises fit for purpose, and we heard how disjointed IT systems are. The data held in the different record systems should be viewed as the patient data—it is about them—yet there seemed to be endless blocks to bringing staff and systems together.

We had hoped the Government would welcome our suggestions for patient data to be shared usefully and safely; for the multidisciplinary team to meet together and plan care; for joint education that would upskill social care to remove the risk-averse barriers to interventions that so often result in patients being put in an ambulance from home or a care home and sent to an already overcrowded emergency department for problems such as a blocked catheter or blocked feeding tube to be sorted out, when it could happen so much more easily if staff were upskilled and the patient would not then need to be moved. Many of the bureaucratic blocks could be overcome by honouring contracts that have all staff working together with common aims and contractual changes that reward work done and outcomes, with meaningless bureaucracy stripped out.

We repeatedly heard how patients cannot get the holistic care they need because staff are working in silos, often overseen by risk-averse attitudes from their managers; they do not feel able to do what needs to be done but revert repeatedly to a view of limited job responsibility. By staff working together under the same roof, as we suggested, for evolving general practices and primary care, integrating with local social care providers and the voluntary sector, the culture of care provision could be improved and better monitored to provide far better health outcomes in the longer term, particularly for frail and vulnerable people, for whom stability of place and of staff is especially important.

The Hewitt Review, published in 2023, found that culture, leadership and behaviours matter far more than structures. We wanted to break down the barriers in contracts and in behaviours, but the Government’s response seems to pull back from supporting our recommendations to focus on broad policies that were written recently, rather than address the need to build on them to create the crucial interpersonal relationships that determine good care. We felt disappointment in the Government’s response because it did not build on what they already are putting in place and encourage further integration, and it seemed almost to dismiss some of our suggestions by saying what they were doing but without welcoming our recommendations.

Immunisation: Children

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Wednesday 8th May 2024 Lords Chamber

[Lord Markham (Con)]

Or “none of the above”. The noble Lord is quite correct. Of course, data is vital in this whole area, and getting that sharing of data and understanding with people is vital. I will come back on the precise date, but I hope it will be soon.

[Baroness Finlay of Llandaff (CB)]

My Lords, there have been more than 1,000 cases of measles in the last six months. What action are the Government taking to make sure that mothers are given options, which maximise convenience, of places to go and times when they could take their children for vaccination, rather than tying them to appointments that may clash with the working day when they cannot get childcare for other children?

[Lord Markham (Con)]

That is an important point. We must try to make sure that vaccination clinics are widespread. We have used pop-up clinics successfully in many locations, particularly around London, and that has helped get 25,000 more jabs into unvaccinated people’s arms in the last few months.

Covid-19 Vaccination: Coronary Disease

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Tuesday 23rd April 2024 Lords Chamber

[Lord Markham (Con)]

Deaths from heart disease among those under 75 are down by about 20% compared with 2010, which is a clear trend. Notwithstanding that, we are very aware—Sir Chris Whitty is concerned about this—that Covid meant that a lot of people did not get basic heart and blood pressure checks. That is why we have introduced the Midlife MoT, which is designed to give people a 10-year risk analysis; have put blood pressure devices in pharmacies and all sorts of other places to get 2 million checks; and have a workplace heart disease strategy check. All this is designed to get that prevention in place so that people are aware of and understand the risks.

[Baroness Finlay of Llandaff (CB)]

My Lords, does the Minister agree that, although we are talking about heart disease, we must also remember pulmonary embolism from clotting disorders, which can persist for up to six months after even a mild Covid infection? A massive pulmonary embolus is another cause of mortality in people who have Covid. One of the problems with the virus is its ability to mutate, but the evidence is that vaccination, even if it does not give you complete protection, moves you from obtaining serious Covid to having milder Covid. That risk of thromboembolism also needs to be monitored in the long term in relation to Covid infections, including for those who have had a mild infection and those who have long Covid.

[Lord Markham (Con)]

The noble Baroness is absolutely correct: a vaccine helped you avoid not just heart disease but all the other impacts of Covid that she mentioned, including long Covid and a whole list of other things. Again, the undeniable advice is that it is much better to have the Covid vaccine.

NHS: Long-term Sustainability

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Thursday 18th April 2024 Lords Chamber

[Baroness Finlay of Llandaff (CB)]

My Lords, I declare my interests as an NHS consultant and chair of the Bevan Commission. I congratulate the noble Baroness, Lady Ramsey of Wall Heath, on her very moving speech and on reminding us of the hardship of the pre-NHS days and why the NHS is so important to us. The contribution of the noble Lord, Lord Patel, in opening this important debate was characteristic of his great speeches.

I had the pleasure of being a member of the Times Health Commission, where we were given the task of suggesting reforms to improve the NHS. It was a very interesting experience, taking evidence from a wide range of people, including previous Ministers. At the end of our deliberations, we came up with a 10-point plan for health, which I will briefly outline now. For patients, it is clear that digital health accounts, such as patient passports accessed through the NHS app, are crucial for the future. Patients need to be able to co-ordinate their appointments, manage any medication and view their own records in full. We cannot expect people to take control of their own health if they do not have their test results, referral letters and vaccination and intervention records, or the ability to review, in their own time, the outcome from different consultations. Patients retain a small percentage of what they are told in a consultation, so it is very important that people can review things in their own time and with their families.

In Wales, we established Talk CPR to address the very important conversations around end of life and resuscitation procedures, which establish whether somebody wants ongoing treatment and intervention. We found that, by giving patients video books to take home, they were much more comfortable discussing issues than trying to have all that discussion in the context of a short consultation. In the Times Health Commission, we focused on the workforce—including the need to reform the GP contract and to write off student loans for people who continue to work in the NHS rather than leaving it—and the importance of no-blame compensation approach to errors, rather than the current blame culture that demoralises.

We addressed the need for mental health support and tackling obesity in particular. It is a precursor to so much disease, and the antecedents of illness can be decades before a patient presents. The importance of research and investing in it became more and more evident. Data collection is crucial for us to monitor and understand better the course of health in our own country, but also as a basis for inward investment from pharmaceutical and technological innovators. The NHS could be a major test bed, with integrated information and fast-track processes, to attract and retain researchers from around the world with inward investment, but unless we speed up the processes for investment we will never reach our goals.

One of our recommendations was to have a healthy lives committee to look at the impact of improved public health and a healthy life expectancy, addressing the antecedents of poor health. But whatever we do, bad things happen: people have accidents, severe illness hits out the blue and new infections emerge. Although palliative care is now in legislation as a core service, contracting is not the same as ensuring that patients have access, yet it is cost effective to involve palliative care services early. We need a national funding formula to support integrated care boards in establishing contracts with palliative care providers. Services must be rapidly responsive seven days a week; without that, the sad toll of inappropriate transfers to emergency departments out of hours will not decrease.

In recovery from a serious accident or devastating illness, early rehabilitation becomes crucial to improve outcomes and decrease costs. Next Monday, I am hosting a drop-in on rehabilitation with the full range of professionals involved. Rehabilitation is cost effective for the NHS, yet, like palliative care and hospice services, it is very patchy in provision. As such, we allow distress and ongoing, avoidable morbidity to accumulate and jeopardise long-term outcomes, in both the patient and the bereaved. Fair access to help in response to need is essential; we must never forget the patient.

Cass Review

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Wednesday 17th April 2024 Lords Chamber

[Lord Markham (Con)]

I remember that it was the noble Lord who, in the round table that we had on this, made very clearly the same point I was making earlier about puberty and age. It is only when you are right the way through it that you really are in a position where you start to know your own mind and your own body. I agree with the noble Lord that it can be as late as 25, and that is why that is definitely the intention behind the eight clinics that are being set up—that they can provide that continuity right up to the age of 25, given that there is such a state of flux in a young person’s life.

[Baroness Finlay of Llandaff (CB)]

My Lords, I thank the Government for giving us this opportunity. Dr Cass’s report is incredibly important. She has taken a scientific, as well as a kind, humane and humanitarian, approach to the children affected and to the way the report is written. In the recommendations, as well as the discussion over puberty blockers there is the importance of ongoing research, research capacity and data. One finding that emerged for her was that there was a lack of consistent collection of data, which means that for many of these children, the people who were looking after them were, in effect, flying blind. That cannot be allowed to continue in future.

Her recommendation 17 is that:

“A core national data set should be defined for both specialist and designated local specialist services”.


Recommendation 18 is that:

“The national infrastructure should be put in place to manage data collection and audit and this should be used … to drive continuous quality improvement and research in an active learning environment”.


My question to the Government is whether, among the organisations listed, there are also discussions with the Royal College of Surgeons, because there is also surgical intervention undertaken in some of the processes. Without a database of the numbers that undergo a surgical intervention, the type of intervention and the complication rates, and monitoring the effect of that surgery on quality of life, we risk carrying on flying blind with clinical treatments that are literally life changing.

[Lord Markham (Con)]

I thank the noble Baroness. She is absolutely right: it is only in that lack of data environment that, dare I say it, ideology can fill in the vacuum and start to drive the sorts of behaviours that we see. Data is always the best way to cut through and provide light when there is a lot of heat in an argument. She makes an excellent point about the Royal College of Surgeons. I am sure that it has been contacted along with all the other bodies, but we need to make sure that is covered off. As ever, I will come back in detail in writing to all noble Lords who have raised points. I will make sure that point is addressed as well.