Lord Carlile of Berriew debates involving the Department of Health and Social Care

There have been 12 exchanges involving Lord Carlile of Berriew and the Department of Health and Social Care

Thu 19th November 2020 Brain Tumour Research (Lords Chamber) 3 interactions (46 words)
Wed 22nd April 2020 Covid-19: Medically Vulnerable People (Lords Chamber) 3 interactions (51 words)
Fri 23rd November 2018 Organ Donation (Deemed Consent) Bill (Lords Chamber) 3 interactions (1,068 words)
Wed 20th June 2018 Gosport Independent Panel: Publication of Report (Lords Chamber) 3 interactions (90 words)
Mon 5th March 2018 General Practitioners: Workforce (Lords Chamber) 3 interactions (44 words)
Tue 14th March 2017 End of Life Care (Lords Chamber) 3 interactions (719 words)
Fri 23rd October 2015 Access to Palliative Care Bill [HL] (Lords Chamber) 3 interactions (680 words)
Thu 10th October 2013 Mental and Physical Health: Parity of Esteem (Lords Chamber) 3 interactions (1,226 words)
Mon 25th February 2013 Health: Anorexia (Lords Chamber) 3 interactions (753 words)
Wed 8th February 2012 Health and Social Care Bill (Lords Chamber) 3 interactions (289 words)
Mon 16th January 2012 Health: End-of-life Care (Lords Chamber) 3 interactions (55 words)
Thu 12th January 2012 Health: Pathfinders (Lords Chamber) 3 interactions (77 words)

Brain Tumour Research

Lord Carlile of Berriew Excerpts
Thursday 19th November 2020

(3 months, 1 week ago)

Lords Chamber

Read Full debate Read Hansard Text
Department of Health and Social Care
Lord Bethell Portrait Lord Bethell (Con)
- Hansard - - - Excerpts

My Lords, I am extremely grateful for a briefing given by Professor Richard Gilbertson earlier today on the specific question raised by my noble friend, which is grants for brain tumours in children. The NIHR system is a gold standard that is envied by the world and does not necessarily need to be broken and restarted. However, the point made by my noble friend is a good one and we are looking at ways of ensuring that more and better recommendations for grants go into the system in the first place so that, basically, we can spend the money more quickly.

Lord Carlile of Berriew Portrait Lord Carlile of Berriew (CB) [V]
- Hansard - -

My Lords, on 6 November this year, the Government spoke of developing quality research and funding through a successful partnership and sustainable alignment with the charity sector. When can we expect to see some results from that initiative, with work and funding to achieve those goals?

Lord Bethell Portrait Lord Bethell (Con)
- Hansard - - - Excerpts

My Lords, the work of the charity sector in medical research is absolutely fundamental to national progress in this area. However, it too has been hit incredibly hard by Covid. We are having a number of dialogues with medical research sector representatives on how we can help. There will need to be a short, medium and long-term approach to getting back to where we were at the beginning of the year. How we bridge the current funding gap is a source of enormous concern to the department and the NHS. I cannot guarantee that we can necessarily embark on exactly the same framework that we envisaged at the beginning of the year, but I can reassure the noble Lord that we are very committed to the research community and we engage with it regularly on how we can help.

Covid-19: Medically Vulnerable People

Lord Carlile of Berriew Excerpts
Wednesday 22nd April 2020

(10 months, 1 week ago)

Lords Chamber

Read Full debate Read Hansard Text
Department of Health and Social Care
Lord Bethell Portrait Lord Bethell
- Hansard - - - Excerpts

My noble friend Lord Lucas makes a completely reasonable plea. On a personal level I completely understand where he is coming from. I have elderly relations who I would like to see, hold, touch and socialise with. But, as I said, I cannot hide from the House that this virus is an extremely predatory killer that has in its sights particular demographic groups, including the elderly and in particular those with conditions. It would be wrong of me to mislead the House by pretending that there was an easy way out of this epidemic for those who the disease seeks to attack.

Lord Carlile of Berriew Portrait Lord Carlile of Berriew (CB)
- Hansard - -

My Lords, given that some very healthy older people have mistakenly received 12-week lockdown letters, including inaccurate and anxiety-causing assertions that they have underlying medical conditions, will the Government permit an arrangement whereby the relevant GP practice can confirm or refute the issue of the letter and certify to that effect?

Lord Bethell Portrait Lord Bethell
- Hansard - - - Excerpts

The noble Lord makes a very reasonable request. I have sought clarification from the department on this point, because his suggestion seems eminently reasonable, and as soon as I have a reply I will write to him and share the contents with the Library.

Organ Donation (Deemed Consent) Bill

(2nd reading (Hansard): House of Lords)
Lord Carlile of Berriew Excerpts
Friday 23rd November 2018

(2 years, 3 months ago)

Lords Chamber

Read Full debate Read Hansard Text
Department of Health and Social Care
Lord Leigh of Hurley Portrait Lord Leigh of Hurley (Con)
- Hansard - - - Excerpts

My Lords, I join in the congratulation to the noble Lord, Lord Hunt of Kings Heath, on his promotion of this Private Member’s Bill. This is of course a very difficult and sensitive subject. First, one must recognise the importance, for those awaiting transplants and their loved ones, of increasing the number of donors as much as we can. I note that the number of donors has been steadily increasing, both in absolute amounts and as a percentage, for the last 10 years—from 771 in England in 2008-09 to 1,349 in 2017-18—and this is of course very welcome.

I have no medical training whatever but I wish to draw your Lordships’ attention to my register of interests, which discloses that I am a vice-president of the Jewish Leadership Council and the president of Westminster synagogue. As such, speaking as a progressive rather than Orthodox Jew, I point out that, as some of your Lordships might be aware, as in many religions there are many strands within Judaism. The Orthodox community would probably be guided by the traditional biblical prohibitions against making any cuts to a body. The body is regarded as a holy vessel, because it has housed a soul created by God. The body therefore has to be honoured, as much as if it still contained a living person. However, I have discussed this matter directly with the Chief Rabbi, Ephraim Mirvis, and he believes that all Jews would temper that view by recognising that there is a higher value of saving a person’s life, and that that trumps all considerations.

Needless to say, every rabbi has a view and the old saying that for every two Jewish people you will find three opinions seems as valid in this field as any other. I am also a member of Hurley’s local synagogue in Maidenhead. The rabbi there, Dr Jonathan Romain, points out that there is the issue of personal autonomy and the fact that our body belongs to us, not to the Government or the NHS. So while it may be very worthy to donate organs after our death, we alone should make that choice. This was before he concluded that whatever the ethics of personal autonomy, and despite biblical objections to making cuts to the body, saving life is the highest objective.

Other rabbis, particularly Rabbi Sylvia Rothschild, point out that, ethically, for any medical procedure a person should be informed about and understand what is to happen, including any risks, and should consent explicitly to each procedure. That would not be possible with an opt-out system, which she encapsulates by pointing out that presumed consent would arrogate to the state rights that were hard won, including the right to own and make decisions about our bodies. The right reverend Prelate the Bishop of Carlisle pointed this out. But she goes on to say—and others make this point—that perhaps the better way to increase the number of organ donors, which I believe currently stands at 24.9 million, is to invest in educating the public to understand the importance of registering if they wish to be a donor.

I am, however, supportive of this Bill, mainly because of the letter that the Minister, Jackie Doyle-Price, wrote to the president of the Board of Deputies of British Jews on 25 October in which she stated that,

“organs and tissue will not be taken without full consultation with persons in a qualifying relationship”.

The Minister specifically stated in that letter:

“There will always be a personal discussion with the family and full consideration … given to the views of a person’s loved ones”.

I thank her for that clarification but it does of course raise certain questions. First, should not this commitment be in the legislation rather than a side letter? Secondly, if this is to be a requirement, do we need the Bill? If in every case there will be a consultation before organ donation, which the letter confirms will require organ donation staff to go to extensive and far-reaching lengths to speak to family members, the opt-out does not really seem to change that much—particularly as there is a commitment that if family members cannot be reached, organs will not be taken from the deceased. I understand and am reassured to know that NHS organ donor teams will in any event need to talk to families as a matter of best practice, to try to determine whether the deceased had any allergies, history of drug abuse or other medical issues.

Leaving my reservations aside, I look to the Minster to confirm today that the terms of this letter will be honoured in full. This commitment is very important; of course, it raises some unresolved issues. For example, some families, such as mine, are mixed. My mother is Orthodox and may have reservations about organ donations, while other family members do not share this view. How will a consensus be reached? If any one person has reservations, will there be a prohibition? It is very hard for someone to determine another person’s faith and ethical views, and rational analysis of what a person would want could be very difficult and stressful at a moment of grief. It is much easier if the deceased has chosen to donate organs by opt-in, but that may be impossible, in reality, if we move to an opt-out system. Accordingly, we need legal recognition of the organ donor register, which is not in the Bill. Indeed, recognition is needed of other first-hand wishes, like the codicil of a will, which frequently specifies such matters in addition to selecting preference on the nature of burial or cremation.

In conclusion, a person’s decision to donate their organs to save the life of another human being is a wonderful act of humanity which deserves the utmost respect and support. Giving the state the right to take those organs, and depriving individuals of the ability to do so as a gift, is a very big step for our society to take. It must therefore carry with it respect for people’s ethical and religious views. I personally would not stand in the way of this Bill, but seek at this Second Reading the assurance from the Minister that I have set out in my remarks.

Lord Carlile of Berriew Portrait Lord Carlile of Berriew (CB)
- Hansard - -

My Lords, I too join in congratulating the noble Lord, Lord Hunt, and indeed the two colleagues in another place he mentioned, on bringing this Bill to Parliament. His characteristic modesty meant that he did not remind us of his enormous experience of the National Health Service, in the management context before he came to your Lordships’ House, as a member of the Government and as a Member of this House. That experience gives us some extra reassurance about the integrity of the Bill and what it proposes.

Debates such as this raise serious, and sometimes acute, ethical dilemmas. I think the ethical dilemmas in relation to the Bill are strongly affected by the fact that this issue is about saving life, not ending it. As your Lordships know from previous debates, I take a very different view on issues that affect the ending of life. I am happy to support the Bill, because it seems to make an entirely positive ethical contribution to the debates we have on such issues, perhaps uniquely, in your Lordships’ House.

I know that repetition rarely improves the quality of any argument. However, the support for the Bill, repeated from all parts of this House, and from all walks of life represented here, provides further important affirmation for it. We know that we are a somewhat unusual institution in this House; if a Martian were to walk in and look at the rules by which we come here, we would not pass the Martian test. Nevertheless, where else in the parliamentary world can we hold such ethical debates? Where else do we hear the kind of evidence that we are hearing in this debate? We very recently heard a wonderful speech from the noble Lord, Lord Elder, who told us of the heart transplant he had over 30 years ago. As we have seen today, it left him a very fit person: he has climbed more mountains than most of us have looked at. I hope he has also been able to enjoy some of the more traditional Scots remedies for exhaustion and other concerns.

We have also heard evidence from my noble friend Lady Finlay, who has spoken about the changes to the law in Wales and how effective they have proved. I think she gave some reassurance to the right reverend Prelate the Bishop of Carlisle about the increasing transplant figures in Wales.

I also look forward to hearing the contribution from my old friend the noble Baroness, Lady Randerson. She and I have known each other for many decades and I pay tribute to her determination. What she did in Wales on this issue was of great value, and I am sure she will provide very valuable evidence in a few minutes’ time.

That leads me to Wales. For many years I was an MP in a Welsh rural constituency and I am completely unsurprised that this system in the United Kingdom was first introduced in Wales. People in Wales tend to think more empirically than many in politics realise. Also, the devolution settlement in Wales, in which the noble Baroness, Lady Randerson, played a very important part, has made it much easier to bring to the statute book changes such as this in matters not reserved to the United Kingdom Parliament. Wales has been able, as has Scotland in some things, to be a trailblazer on this issue and has provided a great deal of evidence.

My belief is that the system in Wales has worked very well. My noble friend Lady Finlay described the advertising campaign, which means that everybody in Wales, unless they spend 24 hours a day asleep, knows about this system and it is discussed in families, as well as in more public forums in Wales. It has worked very well and has widespread popular support, as it will have in England.

I turn to the duties of the medical profession and return to something that the noble Lord, Lord Hunt, said at the beginning of his speech. He told us that he is fortunate enough to have just been appointed as a member of the General Medical Council. I was a lay member of the GMC for 10 years, albeit in its former incarnation as a much more parliamentary-style body than it is now. At the heart of the General Medical Council—I am sure this is true of the much smaller and very distinguished current council—are strong and heartfelt debates about ethical matters. The GMC translates those ethical decisions made by the council into guidance for doctors. If you look at its website, you come very quickly to the guidance currently given to doctors on after-death care and organ transplantation.

I say to the noble Lord, Lord Hunt, that one of the most useful things he can do in his first few weeks on the GMC is to persuade it that that guidance needs to be expanded somewhat so that the section relating to cadavers, parts of which can be used for transplantation, are much more explicit and so that the genuine concerns about that area are addressed. When doctors breach such guidance, of course it should be treated as serious professional misconduct which can bring the most condign remedies against them. However, for doctors to know where they are in these matters, it needs to be set out more explicitly.

The ethical responsibility is laid firmly on the regulator, the GMC, which passes it on to doctors. I hope that the General Medical Council will recognise that what I hope will be the passing of this Bill and the creation of a new system in England as well as in Wales means that it must be very vigilant about the behaviour of doctors in this area. There have been some horrendous cases—such as the Alder Hey case, which has not been mentioned so far in this debate—that have made one a little cautious about presuming that doctors can always be assumed to behave with superb ethical judgment. Sometimes they fail, and they need a stronger regulator to protect the public and themselves from such failures. I add that one of the principles that was often discussed when I was on the GMC was the responsibility of doctors to report other doctors who fall below appropriate standards. That failure, too, can be serious professional misconduct.

With those slight reservations, I support the Bill strongly, and look forward to England, once again, following Wales.

Baroness Brady Portrait Baroness Brady (Con)
- Hansard - - - Excerpts

My Lords, as always, it is an honour to speak here and to follow such knowledgeable contributors as we have heard today. I congratulate the honourable Member for Coventry North West from the other place on a well-targeted, balanced and proportionate Bill, and of course I congratulate the noble Lord, Lord Hunt, on bringing it before us today. After all, on such a sensitive subject as organ donation, when there is any action or intervention from the state or a change in policy, change must be proportionate, justifiable and properly communicated.

We have all heard about the virtues of “nudge economics”, and indeed have seen its success in areas such as the opt-out for workplace pensions, which has had such an impact on saving rates. But of course, organ donation is more sensitive than pension savings, so we must tread carefully. The Bill does so. It does not impact on children or minors, or those who have already opted in, and, significantly, it will not impact on those who have not consented where reasonable evidence can be presented by the family that they would not have wished to be a donor. It concerns only those who have thus far taken no action to specify their wishes. This is a proportionate approach, and I hope that those in any doubt can be persuaded by considering the consequences of the Bill.

Quite properly, the Bill focuses on the treatment of and the impact on donors and their families. However, the benefits will be felt by the recipient, and those benefits are nothing short of the gift of life itself. We have heard today that three people die every day waiting for an organ, and thousands languish agonisingly on waiting lists. Upliftingly, however, statistics from 2017 estimate that 50,000 people—I emphasise that—are alive in the UK today because of organ donation. This is the impact that changes in policy towards donors must be weighed against. But enacting this policy change—which I believe we must do—should be only the first step. It needs to be followed by communication and campaigns to highlight the benefits—the life-changing, even life-preserving, impact that organ donations can have. This is for two reasons.

The first reason is to raise awareness and bolster support for the changes in approach. Changing to an opt-out regime should not be seen as an opportunity to take people by surprise. Even if, as I hope, the default position changes to opt-out, we should still try to deliver a regime that is as close to informed consent as possible. Secondly, the object of the Bill is to increase the number of organs available for donation to help preserve life. It should be noted that, for example, the US has very high rates of organ donation under an opt-in regime, while Greece on the other hand languishes near the bottom of the league tables despite having a similar opt-out regime to the one we are proposing today.

My point is that policy change is the beginning, not the end. There are cultural factors at play that we need to understand and speak to if we are to achieve the ultimate aims of the Bill, which are to boost organ donation while treating organ donors fairly and with respect. However, I am optimistic. As we have heard, Wales has seen an increase from 58% in 2015 to over 70% in 2017, since it introduced the opt-out regime, which surely gives us comfort that the Bill will be impactful and will change lives, especially if it is accompanied by a national campaign that can preserve confidence in the regime and boost organ numbers still further.

The British Medical Association is in favour of this change. Its members see the tragic consequences and wasted life every day caused by the status quo—consequences that can be mitigated by the Bill before us today.

Gosport Independent Panel: Publication of Report

Lord Carlile of Berriew Excerpts
Wednesday 20th June 2018

(2 years, 8 months ago)

Lords Chamber

Read Full debate Read Hansard Text
Department of Health and Social Care
Lord O'Shaughnessy Portrait Lord O'Shaughnessy
- Hansard - - - Excerpts

I thank the noble Baronesses, Lady Wheeler and Lady Jolly, for their very perceptive questions—as ever. First, I extend my personal sympathies to the families and to join my right honourable friend in expressing our apologies on behalf of the Government and the NHS for what has happened to them and their relatives. Like the noble Baronesses have done, I pay tribute to those families and all the others who have fought so tirelessly in seeking justice. As has been acknowledged, we owe a huge debt of gratitude to Bishop Jones and his panel.

The story told in this report is of a litany of failure across many institutions, which often had very closed cultures. Unfortunately, those piled on to one another across many different agencies of government, which is what created that highly unacceptable cover-up for so long. It is about getting to the bottom of that culture. Let us face it: unfortunately these circumstances are not unique. We come across this in different parts of our society all the time, and we need to get to the heart of that closed culture to lead to a culture of accountability and transparency.

The noble Baroness, Lady Wheeler, asked some specific questions, including about the 200 additional patients without notes. Clearly, further investigation is warranted because we need to substantiate that claim. It is obviously one of the work streams that will be going forward. She asked about streamlining professional regulation, given the obvious inadequacies of the GMC and NMC regulators during this process. As my right honourable friend the Secretary of State said, every part of government needs to look to itself with great honesty about what we need to do to put in place the right environment to prevent this happening again. I think we all agree on the need to move forward to streamline professional regulation. It is not something we have yet been able to do, but the tragic news we have been discussing today gives that fresh impetus. It is clearly something we will be looking at.

Patient safety is a great passion of the Secretary of State. There were changes in the oversight of medicines, particularly opioids, after the Shipman inquiry. The noble Baroness raised some good questions about whether there is a need for an independent body, or whether in the Health Safety Investigation Branch we have that body but its remit needs to be reconsidered as part of the Bill going through. I am sure that we will be doing that.

The noble Baronesses, Lady Wheeler and Lady Jolly, asked about the issues around inquiries. One of the things that has been exposed here is that there were overlapping inquiries that were impeding each other or preventing one another moving forward. Making sure that there is a clear process for how that ought to take place when someone—a family member, a staff member, the police—has raised a concern is something we have to get to the bottom of because that bureaucratic muddle was clearly at the heart of the delay and, because of the delay, more people died unnecessarily. It is not just a case of clearing things up and making them neater; it has a massive impact on harm.

The learning from deaths programme is a big step forward. It has been taken into many bits of the health service already. It is now moving into the primary care area. Trusts are already obliged to publish deaths that ought to be in the scope of mortality reviews. From next April, all non-coronial deaths will be subject to investigation by medical examiners. That is yet another part of the patient safety environment that we need to put together.

Going beyond that, there are clearly some very challenging questions that the criminal justice authorities, coroners, the Home Office, the Department of Health and Social Care and all parts of government need to ask themselves to see whether they are really doing everything they need to do to provide a safety net to make sure that when things go wrong we find out about them quickly, we stop them and we learn from them. In the next few months, as we move towards publishing a plan for what we should do next, it is imperative that all Members of this House and the other place, who have great contributions to make in this area, feel free to engage with this process and make their recommendations to it, so that when we report we have done as thorough and comprehensive a job as we possibly can so that we can prevent these tragedies happening again in future.

Lord Carlile of Berriew Portrait Lord Carlile of Berriew (CB)
- Hansard - -

Does the Minister agree that it is particularly shocking that those who did not cover up—the brave staff who expressed concerns about what was happening—were ignored for so long? Does he agree that the culture of closing ranks among some medical staff should be regarded in itself as serious professional misconduct by doctors and others? Does he also agree that there should be training in the whole of the NHS which makes it easier for staff to identify the excessive use of opiates and to have action taken upon it?

Lord O'Shaughnessy Portrait Lord O’Shaughnessy
- Hansard - - - Excerpts

The noble Lord makes two excellent suggestions. His suggestion about whether cover-ups should count as serious professional misconduct will be something the regulators will want to consider, as is better training on the use and prescription of opioids. We have made some progress in recent years. The freedom to speak up guardians are in place, and we talked about the learning from deaths programme. There is also the duty of candour. They are clearly steps forward but the panel has exposed that we are still not there yet. The suggestions the noble Lord makes are good and serious and we will want to consider them.

General Practitioners: Workforce

Lord Carlile of Berriew Excerpts
Monday 5th March 2018

(2 years, 12 months ago)

Lords Chamber

Read Full debate Read Hansard Text
Department of Health and Social Care
Lord O'Shaughnessy Portrait Lord O’Shaughnessy
- Hansard - - - Excerpts

The noble Baroness might be interested to note that in 2014, the number of GPs in specialty training was 2,671, and in 2017, it was 3,157—an increase of nearly 400. That is how we are filling the places.

Lord Carlile of Berriew Portrait Lord Carlile of Berriew (CB)
- Hansard - -

Is the Minister aware of the increasing number of inner-city general practices where the entire GP workforce consists of locum doctors because of recruitment problems? Does he agree that that is an expensive way to provide GPs, and one which diminishes the doctor-patient relationship?

Lord O'Shaughnessy Portrait Lord O’Shaughnessy
- Hansard - - - Excerpts

I agree with the noble Lord: we need to crack down on agency and locum spend. That has been falling in recent years. The way we will fix this issue and the demand for general practice in a sustained way is to increase the number of GPs coming into the service, and, as I said, that is exactly what we are doing.

End of Life Care

Lord Carlile of Berriew Excerpts
Tuesday 14th March 2017

(3 years, 11 months ago)

Lords Chamber

Read Full debate Read Hansard Text
Department of Health and Social Care
Baroness Masham of Ilton Portrait Baroness Masham of Ilton (CB)
- Hansard - - - Excerpts

My Lords, I congratulate my noble friend Lady Finlay of Llandaff on all she does for end-of-life and palliative care and thank her for having secured this debate. In a few days’ time this month, it will be the anniversary of when my husband died, on a Sunday. In the few minutes I have, I want to relate to your Lordships the experience I had with my husband’s end of life, so that, I hope, it will improve the lot of others when it happens to their loved ones, and to put some suggestions forward.

I was married for 47 years, and my husband would have preferred to die at home, but this was not to be. One day, while sitting watching cricket on the television, he had a stroke, which triggered diabetes and Parkinson’s disease. For about 10 years, he had many complex problems, such as bleeds and a cancer tumour; the wound did not heal. As time went on, swallowing became a problem, and care had to be taken when eating. One Friday, he had a chest infection, and in the evening, an out-of-hours doctor came out and prescribed an antibiotic which had to be in liquid form. As we lived in rural north Yorkshire, it took time chasing around to find a supermarket which had the antibiotic in liquid form. The next day, his condition had not improved. I telephoned the out-of-hours doctor, but it being a Saturday, a different doctor was on call and refused to come out. Had it been one of my sheep, the out-of-hours vet would have been out within the hour. My husband needed the antibiotic in a drip, but it was impossible, even though I tried, and tried very hard. My husband’s carers could have managed it.

On the Sunday, my husband wanted me to represent him at a lunch he would have attended. On my return, his condition had worsened, and I telephoned again. Another out-of-hours doctor sent an ambulance, and my husband was taken to A&E in the hospital which was receiving patients that weekend. I followed in my car. In A&E, there was a doctor, a charge nurse and me. As this was not the hospital which had looked after my husband before, there was no way in which the doctor could access his medical notes, and the GP’s surgery was shut. The doctor could not get a cannula in a vein, and given my husband’s very complex condition, the situation became untenable.

I feel there should be some system so that vulnerable people who may become very ill are known by the local health bodies. The hospital chaplain of my husband’s faith was late. My husband died with me holding his hand while his life ebbed away, and the doctor and nurse could do no more. Afterwards, as it was classed as a sudden death, two young police officers arrived, but no one seemed to know what was happening. The GP came and saw me on the Monday so he could sign the death certificate.

More help should come into the home, and there should be the ability to have a drip. Records should be with the patient and there should be better planning at weekends, as things can happen so quickly. Out-of-hours doctors should be understanding and compassionate. There should be a system with good communication for end-of-life situations. I hope the Government, CCGs and all concerned can come together and commit to finding a way of providing compassionate end-of-life care.

Lord Carlile of Berriew Portrait Lord Carlile of Berriew (Non-Afl)
- Hansard - -

My Lords, I am sure the whole House will have been moved and instructed by the courageous speech that we have just heard from the noble Baroness. I look forward to the Minister’s response to it.

I pay my tribute to my noble friend—and indeed my very good friend—Lady Finlay for obtaining this debate and opening it with such skill. We in this House all benefit from her knowledge of palliative care, and indeed many of us have deferred on many occasions to that knowledge in quite specific circumstances.

It is a very good thing that we are able to debate the subject in this House and that so many noble Lords wish to take part. Indeed, I pay my tribute to the Government producing a document called Our Commitment to You for End of Life Care: The Government Response to the Review of Choice in End of Life Care. I cannot imagine that such a document would have appeared from a Government 10 or even seven or eight years ago. We are now beginning to talk properly about death and end-of-life care.

There must be many in this House—many of us have lost our parents, for example—who have witnessed the death of someone we love and have long loved. We heard the phrase “the quality of death” earlier in this debate. For me, one of the greatest privileges I have had was to witness a quality death in people whom I loved. Witnessing the death of someone you love and have long loved is a profoundly moving experience if it happens to you. To my mind, it is capable of being as profound an event as witnessing the birth of someone you are about to love as a parent. For death to be an event of that quality, however, good end-of-life care is essential.

I turn to children’s end-of-life care, a subject very eloquently spoken to by the noble Baroness, Lady Bakewell, and the noble Lord, Lord Suri. At the end of the 1990s and the beginning of this century I was a trustee of a children’s hospice, as it then was, on the Wales/Shropshire border. It made an enormous contribution to the lives of sick children and the lives of their families, who sometimes desperately needed respite from the difficulties that their dying children brought to the whole family, including their siblings, who often find that situation very difficult to cope with. It provided a process of death for children that was effective and moving and meant that everyone in the family was able to look back on that death as one of the most significant and historic events in the life of the family.

What worried me then, and worries me still, is that the statutory sector was reluctant, and remains reluctant, to recognise the contribution made by charitable organisations that provide hospice care for children. At the time when I was a trustee, there was barely any funding coming from the statutory sector to charities that were running children’s hospices. The situation is better now. Nevertheless, nearly one in five of commissioning groups do not commission children’s hospices at all, and seven commissioning groups refuse to commission children’s hospices to provide care just because they are charities. That is part of the very useful information that I and other Members of your Lordships’ House have received from Together for Short Lives and the Rainbow Trust, which I applaud for the assistance they have given to us towards this debate.

I shall simply ask the Minister one or two of the many questions posed by those charities. Given that it is the Government’s stated intent to make sure that commissioners prioritise children’s palliative care in their strategic planning, will the Government now take steps to make sure that clinical commissioning groups understand that they are responsible for commissioning for children’s palliative care and that they embrace the work that is done in the third sector? Will the Government also make sure that they are accountable to NHS England for delivering comprehensive children’s palliative care to end the postcode lottery that has been mentioned?

The final point I shall mention, because the hospice that I was a trustee of was in a rural area, is to ask the Government to try to ensure that rurality is not a handicap for families with dying children.

Baroness Massey of Darwen Portrait Baroness Massey of Darwen (Lab)
- Hansard - - - Excerpts

My Lords, I am indeed grateful to the noble Baroness, Lady Finlay of Llandaff, for raising the issue of end-of-life care and for introducing the debate in such a knowledgeable and sympathetic manner. I also thank the House of Lords Library for setting out the issues for debate in such a clear manner, following the report of the programme board’s review and the Government’s response. I come at this debate from personal experience as my brother died in a hospice last October, having been diagnosed with cancer of the tongue, followed by secondary cancers, in January.

There are many positives about end-of-life care in the UK in all settings, and the intentions expressed to improve it are to be admired. I note the recommendations on offering choice of care; on honest conversations with healthcare staff; on recording of a chosen plan of care; and on having a named responsible senior clinician in charge, and a care co-ordinator. I note the recommendation that carers for people at the end of life should have their needs for support met and that family members, carers and those important to the individual should be involved in discussions about care preferences. Joint working between palliative care specialists and other clinical staff, and between secondary and primary care staff to identify need, is highlighted, as is breaking down organisational boundaries to allow staff working in acute settings to play a role in community settings. There is a welcome reference to NHS and social care organisations working together with the voluntary sector to support hospices in response to the concept of a national framework.

Those issues ring very true when I consider my brother’s path through care in east Cheshire. The staff at all levels were superb, from diagnosis through to treatment and finally to death. The GP visited the home and was understanding and caring of the needs of both my brother and my sister-in-law, who was caring for him at home. The district nurses were wonderful, as were ancillary staff. One of them recommended a hospice respite twice as my sister-in-law, a complete star, was doing a difficult job with resilience and strength but under immense pressure. She was becoming exhausted, caring day and night for my brother. A suction pump for mucus in the mouth and throat caused him to have panic attacks. By this time, he could not speak.

I turn now to some more negative issues. One is about communication. Sometimes there was a letter indicating the next hospital appointment, sometimes there was not. There were phone numbers to contact in case of emergency. This mainly worked—but, occasionally, there was a long wait. For example, my brother collapsed twice, and twice a suction tube became blocked—once at night. Some nurses did not appear to know how to use a suction pump.

But to go back to the positive, services such as physiotherapy were automatically brought in for my brother. I was impressed by the directness of the staff whom I met; there was no dissembling about the serious and inevitable nature of the illness, which helped all of us.

I come, finally, to hospices and their funding. The East Cheshire Hospice was superb. My brother received treatment not only for the clinical aspects of his condition—he received massage, art therapy, reiki, acupuncture and other alternative therapies. He also had wi-fi. There is a centre called the Sunflower Centre attached to the hospice, where my sister-in-law could get advice and treatment if she wished. At my brother’s death, the chaplain ushered the family into the garden, brought tea and biscuits and chatted. None of our family is religious; she simply offered quiet reflection and advice on what next. She knew all the religious bodies in the area, and the humanists, and offered to contact whoever we wanted to take charge of the funeral ceremony. A nurse offered counselling sessions to my sister-in-law. All these non-medical interventions were so important and so life-enhancing in the midst of death. Often, it was little gestures that counted.

It seems that NHS funding does not follow a patient into a hospice, although it would into a nursing home. Hospices, seemingly, have to fundraise to provide their services. Could the Minister explain this situation? Just before he died, my brother wrote me a note which said, “You have to do something about hospice funding”. Well, I am doing what I can. Can the Minister help?

Access to Palliative Care Bill [HL]

Lord Carlile of Berriew Excerpts
Friday 23rd October 2015

(5 years, 4 months ago)

Lords Chamber

Read Full debate Read Hansard Text
Department of Health and Social Care
Lord Quirk (CB)
- Hansard - - Excerpts

My Lords, of course I, too, must begin by joining those who have thanked my noble friend Lady Finlay for presenting Parliament with this authoritative and timely Bill. There can be no one in this House, no one in this country, so well qualified in the whole area of palliative care, and we can be sure that every single detail in Clauses 2 and 3 of the Bill, for example, addresses issues that have been expertly identified by my noble friend in her personal experience as a clinician.

About 500 years ago, Francis Bacon memorably noted:

“Men fear death as children fear to go in the dark”.

He was using “men” in the gender-inclusive sense, of course. But I wonder why pharmacological progress in pain management, especially in the last half-century, does not seem to have mitigated or reduced this primeval fear of death. Perhaps it is because so little is known or understood of the comfort and relief that can be afforded by the current standard of palliative care when it operates at its best. Why else is there this trickle of desperate folk to seek terminal help in Zurich? Why else does a steady majority in this country, identified by opinion polls, favour the assisted suicide advanced by the noble Lord, Lord Joffe, and, in recent months, persuasively, by the noble and learned Lord, Lord Falconer of Thoroton.

The sad fact is that those with a good knowledge of current standards in palliative care know also how “patchily”, as my noble friend said, a high standard of such care is available in this country. We should, of course, be proud of our enviable record in this field—proud to be voted this very year, 2015, as the best in the world, just as we were in 2010. We should be proud of such selfless trailblazers as Sue Ryder and Cicely Saunders. Indeed, one of my own proudest moments as vice-chancellor of the University of London came when both these ladies accepted honorary degrees.

We can be proud, too, of our great charities, as the noble Lord, Lord Howard, noted. When in the late 1960s Dame Cicely approached Sir Isaac Wolfson, he and his trustees were enthused and began at once to join in the funding of this new wave of hospices. His son and successor as chairman, Leonard, later Lord Wolfson, was equally enthusiastic, as were a succession of trustees, such as the noble Lords, Lord Turnberg and Lord McColl of Dulwich, right down to the present, to the tune of many millions of pounds. The Wolfson Foundation has supported no fewer than 130 hospices across the UK, all reducing the fear Bacon spoke of, as, whether children or adults, we make our way into the dark.

Proud as we can be of this litany of praise and success, we have a very long way to go, and the rest of the world has relatively further still. Even in such a relatively well-provided area as London, the variation in provision from borough to borough is alarming. Such variation is gravely amplified when we look at the UK as a whole. In some quite extensive areas, patients seek in vain palliative care of the kind they need. This Bill specifies succinctly and authoritatively what needs to be done as a matter of urgency, and it surely deserves our wholehearted support.

Lord Carlile of Berriew Portrait Lord Carlile of Berriew (LD)
- Hansard -

My Lords, I apologise to some noble Lords who spoke earlier, whose speeches I unavoidably had to miss. The noble Baroness, Lady Finlay, and I have stood side by side on the legislative battlefield on numerous occasions. I have always been willing to serve as her Baldrick, but when I use that comparison I do her an injustice because she is most certainly no Blackadder. Indeed, on all subjects, but especially on this one, she is very wise and knowledgeable, and I know that there are Members of your Lordships’ House other than myself to whom she has generously given private time when they have had issues around what we are talking about today. I support this Bill wholeheartedly.

This Bill is, of course, essentially about death. We should not have to feel gloomy about death in the way that seems so traditional in our country. I carry in my mind memories of my father’s death. I was lucky as I had a wise and wonderful father and his death was therefore a great sorrow to me. As I recall the last 24 hours of his life, every moment of which I witnessed, I can get almost a precise replay in my mind’s eye of everything that happened, everything that he said and all the thoughts that we exchanged before he was no longer able to speak, and it brings me great joy.

Today, 2,000 families in this country will face a death in the family. I wish that they could enjoy what I and, I believe, my father enjoyed on that day more than 25 years ago. My father did not want to die, but he was not afraid of dying. What occurred was almost the perfect end to life, but I am well aware that that does not happen everywhere.

Settings for death differ, and I have witnessed some of them. They include hospitals, nursing homes, residential homes and homes. I agree with the noble Lord, Lord Warner—wherever he cares to sit in your Lordships’ House—that if at all possible people should be able to die at home as long as home is the right place for them to die and the circumstances are there. Wherever possible, those circumstances should be provided. That is much of what this Bill is about.

Let us face it: in most cases death is predicted, at least within a relatively narrow timeframe. We prepare for birth over a period of nine months. We do not know exactly when the birth will occur, in most cases, but we are ready for it. We are ready to move as a family; we are ready to drop everything; we are ready to be part of a great family event at which we rejoice. I wish that we could do the same about death. In many cases, we can prepare for it and be at the side of the loved one who is departing from the family.

What has happened is that there has been almost a postcode lottery in relation to the way in which death is managed. In some parts of the country, provision has been very good and holistic; in other parts, and I have seen this too in my own family, it is, frankly, haphazard and disconnected, and you depend on the chance that there is at least one nice and sympathetic person present as the relative dies.

The Bill is about creating much wider knowledge and of creating training so that people are ready to deal with death. Dr Twycross, emeritus clinical reader in palliative medicine at Oxford University, wrote a very compact and telling letter to me about this. One of the things he said was that lectures are not enough, and that apprenticeships of an appropriate length and intensity are vital, particularly for doctors training to become specialists in gerontology, oncology, respiratory medicine, cardiology, neurology and pain medicine. I agree with him absolutely that training is about much more than lectures; it is about creating standards and knowledge. I believe that the noble Baroness’s Bill would help to achieve those high standards and good knowledge.

Viscount Bridgeman Portrait Viscount Bridgeman (Con)
- Hansard - - Excerpts

My Lords, I am the last of many speakers today to congratulate the noble Baroness, Lady Finlay of Llandaff, on this, her latest contribution in her distinguished record of palliative care treatment in this country. I declare a non-pecuniary interest in having been for 11 years chairman of the hospital of St John and St Elizabeth in St John’s Wood, London, which, unusually for the hospice movement in this country, has within it St John’s Hospice, forming part of the same charity. In common with most other hospices of similar size—in this case, 22 beds—St John’s has contracts with a number of adjacent health authorities, in its case seven in north and west London. I have to say that patients who are near the end of their lives, whether they wish to spend their last days at home, in hospital or in a hospice, are liable to find themselves participants in a postcode lottery —rather surprisingly, in such a small area of London.

I shall give your Lordships some examples. Hospice at home is developed by many hospices. It is vital but it has administrative problems. Statistics show a slow but steady increase in end-of-life patients wishing to spend their final days at home. Some of the health authorities in the group pay for hospice at home but some do not. Some commissioning groups, which are the flagship of the innovations in the 2012 Act, pay great attention to palliative care but, regrettably, others—again, this is the experience of the hospice with which I am familiar—have palliative care low down on their list of priorities, a point that has been raised many times in this debate. Again, I refer back to hospice at home: here there are, more than ever, likely to be continuing problems of communication as most are elderly patients, many with varying degrees of dementia and of course in dispersed locations. In the catchment area of St John’s, several CCGs do not include in their team the post of palliative lead GP, a GP who, being especially experienced in palliative care, is ideally placed and qualified to ensure good communication with patients at home, and indeed good communication between hospice and CCG. Here again, some CCGs have this very important post and some do not.

A final example of the postcode lottery is the matter of contracts between hospice and health authority. In the St John’s group, only two out of seven health authorities have contracts for more than one year —in both cases, for three years. This is probably outside the scope of the Bill but the advantage to both parties is obvious with regard to long-term planning, and it is surely likely to be reflected in the treatment and facilities available to end-of-life patients with the right postcode.

How, therefore, is all this addressed in the Bill before your Lordships? I suggest that that very point I have sought to raise is addressed directly or indirectly in the Bill under Clause 2(2). In its 10 paragraphs there is in effect a series of minimum benchmarks of performance which I am confident should serve to raise minimum standards across the board and thereby go some way to eliminating the more glaring effects of the postcode lottery to which I have referred.

In conclusion, I must say a word about funding of the hospice movement, which has been referred to, particularly by my noble friend Lord Howard of Lympne. Traditionally the funding of hospices by Governments of all parties has varied widely, from 50% of operating expenses down to percentages in the 20s. The noble Lord, Lord Howarth of Newport, has of course referred to children’s hospitals, where funding is even lower than that. Therefore the shortfall has to be found from appeals and other fundraising events, and £1 million a year is probably the bottom-line requirement. I suggest that there is degree of cynicism on the part of government in all this. This is not a party-political point—it is common to all Governments. Every Government know that in the end virtually every hospice always gets its operating costs funded from somewhere.

I therefore say to the Minister: what a marvellous opportunity for the Government to show their appreciation for this marvellous movement, which, as the noble Baroness, Lady Finlay, has reminded us, leads the world, by at least raising across the board the average percentage of support which they are able to give.

Mental and Physical Health: Parity of Esteem

Lord Carlile of Berriew Excerpts
Thursday 10th October 2013

(7 years, 4 months ago)

Lords Chamber

Read Full debate Read Hansard Text
Department of Health and Social Care
Baroness O'Neill of Bengarve Portrait Baroness O'Neill of Bengarve (CB)
- Hansard - - Excerpts

My Lords, I think that we are all very grateful to the noble Lord, Lord Layard, for securing this debate. It is a theme of such enormous dimensions that it is almost tempting to avoid how centrally serious it is. He has concentrated on this area for many years, and I am sure that many of us have learnt from his work. I declare an interest as chair of the Equality and Human Rights Commission, which has among its responsibilities helping to reduce—of course, one hopes, to eliminate—unlawful discrimination on the basis of disability, including unlawful discrimination on the basis of mental health disability.

Speaking in June this year, the Minister with responsibility for care services, Norman Lamb, commented on the Royal College of Psychiatrists’ report, to which reference has been repeatedly been made, Whole-Person Care: From Rhetoric to Reality (Achieving Parity Between Mental and Physical Health). He said:

“What do we mean by parity of esteem? … I think the report—in its definition and vision for parity—has it right. It’s about equality in how we think about mental health and physical health care—it’s about how they’re valued. We need to ‘close the gap’ with physical health services—whether that’s a gap in access, in quality, in research, or even in the aspirations we have for people”.

As the Minister made very clear, this is an extremely large agenda ranging from the commissioning of services and the integration of services to interventions to reduce premature mortality among those suffering from mental health conditions. It is also an agenda that stretches far beyond the NHS. Indeed, it is an agenda to which anybody and everybody, particularly employers, communities and schools, can make a large contribution.

Parity of esteem is not just a matter of ensuring that different conditions are treated with the expertise appropriate to them, although that is, of course, central. It is not just a matter of concern within the health and care systems that the people who suffer these conditions are treated with dignity and respect. It extends far beyond medical treatment and care, and many non-medical approaches are also of great importance.

First, I shall give a brief reminder of how stark and bitter the absence of parity of esteem and all that goes with it can be for those who suffer mental health conditions and for their friends and family. I have been permitted by a colleague to quote from an account from a family with two sons who are both young adults. One is in an advanced stage of muscular dystrophy and the other is diagnosed as chronically mentally ill. The family said:

“The son who is physically disabled has many special needs. He gets emotional support everywhere he turns. His handicap is visible and obvious and the community, family and friends open their hearts to him and go out of their way to make his life better. My other son, on the other hand, is misunderstood and shunned by all. He is also terribly disabled … but his disability is not visible.”

At least, it is not visible in the same way. The extended family,

“all think that he’s lazy, stupid, weird and naughty. They suggest that somehow we have made some terrible mistake in his upbringing. When they call on the phone they ask how his brother is and talk to his brother but they never inquire about him. He upsets them. They … wish that he’d go away”.

That is poignant and sad, and shows how stark the absence of parity of esteem and all that goes with it can be for those who suffer mental health conditions. That probably is an extreme case, all the more poignant for being in one family, but it reminds us of a lot.

Of course, these conditions and their diagnoses are complex and highly varied. Many conditions have both mental and physical aspects. For example—I know that this also is a very large area of need—difficulties with communication are not easily classified as mental or physical, and there are many other conditions that combine both sorts of symptom. We have to agree that there are physical conditions—for example, disfigurement —where sufferers may encounter reactions from others that are as harsh as those sometimes faced by people with mental health conditions.

We also have to remember that there are many conditions which people do not want to disclose. We have very little idea how many of those we live among may be coping on a daily basis with physical and mental conditions that are invisible to us, that they manage more or less adequately and that they try to keep to themselves, be it diabetes or depression, digestive problems or severe phobias. Nor do we have much idea how much physical or mental pain, or both, others are often managing, whether day-in, day-out or episodically. Much of the burden of disease is invisible to others, and much of it is not solely mental or solely physical.

We also must not forget the cases where the conditions are all too visible. One of the difficulties is that the person who has the condition becomes invisible because people focus on the wrong thing. One only has to witness the many terrible stories of the condescension to which wheelchair users are subject, as though the use of a wheelchair somehow rendered one incapable of speaking.

For all those reasons, I believe that, while changes in the way in which we organise health and social care are essential for securing parity of esteem for persons with different sorts of health conditions, much also depends on the social and economic arrangements that we have, and in making sure that they recognise and include those with varying health conditions.

I shall make just a few illustrative comments on the way in which wider employment and community arrangements can make a difference. Let me start with something that perhaps is mainly a concern of schools; namely, speech and language difficulties. It has long been recognised that this is a major area in which complex interventions and social support matter greatly. The Bercow report, A Review of Services for Children and Young People (0-19) with Speech, Language and Communication Needs, was published a few years ago but its findings bear repetition. It states:

“Approximately 7% of five year olds entering school in England—nearly 40,000 children in 2007—have significant difficulties with speech and/or language. These children are likely to need specialist and/or targeted intervention at key points in their development. Approximately 1% of five year olds … more than 5,500 children in 2007—have … severe and complex”,

difficulties in this area.

“They may not understand much of what is said to them … may have very little spoken language”,

and are at risk of other mental health conditions.

Specialist intervention is, of course, what is important for such children and young people but again it is not all that is needed. For those with communication difficulties, the reaction of others can be one of the worst hurdles. The parents of such children,

“expressed concern that their children’s ability to communicate, to speak and to understand was taken for granted”.

They said that,

“their children often looked like any ‘normal’ child and yet behaved differently”.

One parent commented:

“They don’t think quickly and they can’t express themselves quickly, but they look as if they can manage. All my children stare at people because they are looking for cues, and that causes fights”.

Here we can see very clearly that a great deal of what matters for partly invisible conditions is inclusion; that is, including the child with communication difficulties in activities, in school, in play, in the community and, later, in the workplace.

A final example is one that employers can foster. I believe that the example of really energetic ways to develop flexible working can make a great difference to many people. The British Telecom report, Flexible Working: Can Your Company Compete Without It?, states:

“At BT, flexible working is business as usual. Already seven out of 10 people work flexibly and nearly 10% are home-based. It has saved the company millions in terms of increased productivity and cut costs. It has also motivated our people and released more potential … we are attempting nothing less than the complete transformation of the way in which the company runs, the way we communicate, and the way we work together”.

For BT, that saves costs and improves productivity. I think that we must all acknowledge that it is in an advantageous position because telecommunications allows for distant working more easily, but remote working, even if harder in other areas, can have many benefits—above all, the benefit of the possibility of including many people who either could not travel to work or could not work as many hours as some others. It has great benefits for carers, including the benefit of a working life of self-respect and money they have earned.

There are many other examples of businesses making creative and effective use of specific disabilities, including mental health disabilities. There are companies that have found ways to use the distinctive capacities of some people with high functioning autism spectrum disorders to carry out tasks that require focused accuracy and have given them preferential employment in these areas. For example, the Danish company—I may mispronounce it—Specialisterne, is almost entirely staffed by people with autism spectrum disorders. They specialise in the high precision task of quality checking software. Apparently, those of us who do not have those disorders would be less good at it.

The benefits of inclusion matter greatly for those with mental conditions as well as those with physical conditions. We should make efforts to secure as much inclusion in schools, at work and in community life for those with disabilities of all sorts as we possibly can.

Lord Carlile of Berriew Portrait Lord Carlile of Berriew (LD)
- Hansard -

My Lords, the noble Lord, Lord Layard, has taken a long and influential interest in mental health; not least as a leading economist, he has made a powerful economic case for parity of esteem. We are very grateful to him for securing this debate.

I notice that the noble Lord is sitting alongside the noble Lord, Lord Bragg, on what I suppose one could describe as the polymath Bench this afternoon. This morning, the noble Lord, Lord Bragg, presented a most interesting Radio 4 programme featuring the life of Galen, the extraordinary second century Roman doctor. Galen discovered many things about medicine. One was that he realised that much of the variation in physical health and in human behaviour can be explained by temperament and stress, as he put it. He identified the inseparable links between physical pathology and psychopathology 1,900 years ago. To some people suffering from mental illness in this country and in particular to those who live with them, it can sometimes appear as though little more has been learnt in the past 2,000 years.

Of course, that is unfair. Generally speaking, huge advances have been made in the treatment of mental illness. Drugs are available which, for example, have vastly improved the quality of life for patients suffering from bipolar disorder and, more recently, for patients suffering from acute schizophrenia and other conditions. Therapies, not always involving drugs, have had a remarkable and beneficial impact on many individuals—albeit, I am afraid, with patchy availability in this country. I had the privilege of serving as Member of Parliament for a constituency in rural mid-Wales for some years. This is a bit historic, but even today I understand that the availability of therapies is very uneven in an area like that. You can get a therapy, but not necessarily the right therapy. Providing the correct therapy is extremely important.

The stigma of mental illness remains an obstacle to progress. The fear of telling an employer of a psychiatric diagnosis remains much greater than revealing a physical illness, however serious. In my own legal profession, I have seen careers destroyed by a psychiatric illness of limited duration, whereas a physical illness of similar duration has been received with sympathy and patience and people have been able to return to practice.

There has been some progress. The media have taken a commendable lead. I do not only listen to the noble Lord, Lord Bragg, on the radio; sometimes I watch television drama. Storylines in recent crime noir series, in “Homeland” and elsewhere, have highlighted that anyone, including the at least apparently heroic, can suffer from a mental illness and still lead a perfectly normal life and provide service to society.

Recently, I enjoyed the privilege of co-chairing with Professor Dinesh Bhugra an investigation for the Mental Health Foundation into the future of mental health services. Our report, Starting Today, was produced last month. There is not enough time in a debate such as this to go into the detail of the report, but one of its foundations was pleasure at the 2011 English mental health strategy, which rightly committed this country to parity of esteem. However, the declaration, welcome as it is, has not been matched by progress, which has been variable and not yet quick.

The Mental Health Foundation report has headlined a number of issues which could develop parity of esteem in the coming years. I will refer to a few of them. We certainly took the view that we need to look at fresh ways of implementing known best practice alongside developing technology. Above all, I would like to highlight mental health in primary care. GPs should become—but in only a few cases have become—leaders in mental health care, providing quickly accessible services in their surgeries.

I referred earlier to rural mid-Wales. I know of one practice which years ago introduced a psychotherapist into the health centre in a small Welsh market town. It had a remarkable effect. It meant that the doctor could say to the patient, “I think you need to go down the corridor and talk to my colleague”. An intervention was made which beneficially affected the life of the patient concerned. We need to see more of that. By the way, a two-week wait for an appointment with a doctor just will not do for someone suffering from a growing mental condition. GPs need to know as much about mental illness as about physical illness. So far as possible, primary and secondary mental health services should merge to produce early treatment and the value for money that the noble Lord, Lord Layard, has identified in some of the work he has done over the years on mental health.

The Mental Health Foundation report also found that there is value in self-management. So far as possible, patients in a personalised service should be encouraged to take training in the management of their own care in partnership with therapists and clinicians. A stake in your own recovery is a real incentive for a person who is suffering from mental health problems, but it needs some formal help.

Turning to crisis care and community support, every accident and emergency facility should be equipped to deal with emergency mental health issues, to be followed up by community support. They are not. All over the country, they are not equipped. That is not acceptable.

On collaborative working, I emphasise something that I have encountered in other areas, such as child safeguarding, which is the sharing of information. When somebody with a mental illness goes into an accident and emergency department, a solicitor’s office, a police station or a school, they go into a silo. That is not acceptable. Data protection is used as an excuse for not sharing information. Actually, it is near criminal not to share information for people who have needs that are demonstrated by mental illness. We must ensure that those who have information to share do not sit in silos and that the ability to pool funds from different funding streams into a single integrated care budget, shared protocols and partnership agreements, co-location of services, multi-disciplinary teams and liaison services becomes a reality.

The Mental Health Foundation report also emphasised the beginning and the end of life as key areas where mental health interventions should be made available quickly and fully. Early interventions in schools can identify mental health issues that affect not only the child but the child’s parents and carers. Many cases have been highlighted in some terrible reports that have been produced after fatal events that show that to be the case.

The final issue that I want to raise in the time available concerns the elderly. Perhaps this is an issue that we can raise comfortably in your Lordships’ House because so many of us are OAPs these days. There is a growing issue, as we all know, about elderly care. Many of us have enjoyed having parents who lived into their late 90s and indeed, happily, there are Members of this House in their late 90s, but we know that this issue needs a great deal more work than it has received. It will enable elderly people to lead a full life albeit while suffering from some incipient dementia.

There are many challenges and this debate highlights them. It allows us to show Parliament’s determination that parity of esteem should be a must and not merely a phrase.

Baroness Hollins Portrait Baroness Hollins (CB)
- Hansard - - Excerpts

My Lords,

“No health without mental health”,

was the strap line adopted by the Royal College of Psychiatrists during my presidency and now for the Government’s mental health strategy. Dividing a person’s health into either physical or mental is a false dichotomy and one that has for too long encouraged us to focus on parts of a person rather than on that person as a whole. I remember as a medical student being asked to, “See the spleen in bed six”. Things have moved on a little since then, but psychiatric patients still find themselves being referred to as schizophrenics or manic depressives.

Parity of esteem is not, of course, a new concept. As long ago as 1946, the World Health Organisation defined health as,

“a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity”.

Some 67 years later, billions of pounds in resources have been poured into physical health. We have created sophisticated cancer drugs, mapped the human genome and surgery can be done through tiny incisions. We do not even think of these things as remarkable any more. But the unequal allocation of funding and resources has left mental health some way behind physical health. Parity is not just about increasing resources for those with serious mental illness, but about attending to the physical health of people with mental illness or people with learning disabilities and attending to the mental health of people with physical illnesses.

As an example, GPs receive a payment for offering a health check to people with learning disabilities each year, but although this has been policy for some time, less than 50% of people with learning disabilities have yet had one—no wonder their life expectancy is so much lower than others when the reactive approach to physical health and mental health does not take account of the extra needs of some members of society in order to achieve good health. I would welcome a comment from the Minister about this point.

Parity is something that most people have not even started to think about. The BMA Board of Science, which I chair, is preparing a report on parity of esteem for its members at the moment. But as a colleague at the BMA recently commented, giving parity to mental health is a massive paradigm shift, which will have huge effects for many years to come. Despite the Equality Act, few healthcare staff understand that it applies to disabled people, including those with mental disorders, who are using mainstream health services. Sadly, discrimination is too often alive and well with respect to mental illness and learning disability.

Parity will have an effect on the training and education of all healthcare staff. It will have an effect on the commissioning and organisation of whole person healthcare. Just think: the time may have come to employ psychiatrists in acute hospitals, not just as part of liaison teams, but on the same terms and in the same numbers as other consultants so that more timely assessments and treatments can be offered. There could be psychiatrists who work with children, women, pregnant mothers, older people and adults, working alongside paediatricians, obstetricians, physicians, in the accident and emergency department and so on.

To focus so many of our resources on merely one aspect of health not only leaves other aspects untreated, it makes it difficult to treat physical illness properly. To use an analogy, it is like a three-legged stool, which supports the physical, mental and social health of a well-functioning human being. To take any one of those legs away or to shorten one leg is to leave the stool unbalanced and potentially unable to stand up at all.

I have spent most of my working life in the field of learning disability, both as a psychiatrist and as a parent, and I have often said that if you get it right for people with a learning disability, you will get it right for everyone. People with learning disabilities have complex needs and the interplay and overlap between physical and mental health is inescapable in this patient group. Not only that, but people with learning disabilities have higher levels of both physical and mental health needs than the general population. For example, they are twice as likely to suffer from depression and three times as likely to suffer from schizophrenia. The life expectancy of someone with a learning disability is 20 years less than the general population, even when factors directly related to the learning disability are removed. One in five people with a learning disability will not see their 50th birthday, and half of all people with a learning disability will die from pneumonia, often caused by choking on the wrong type of food or drink or aspirating it and getting pneumonia as a consequence.

This health inequality is often caused by a failure to consider both physical and mental causes of a deterioration in functioning, or to attribute any difficulties to the underlying learning disability—a type of diagnostic overshadowing in that it must be due to the learning disability. The health needs of this group are significant, but if you get it right for them, you get it right for others too.

Take, for example, John. John was admitted to hospital for an investigation of his physical deterioration, but in order to investigate the problems fully, he needed some investigations, some of them uncomfortable, unpleasant or painful. The staff made an attempt to get John to comply, but they were busy and did not know what to do. They shouted at him, begged him, offered him chocolate and called the consultant, but they did not make effective reasonable adjustments to facilitate his care. They did not understand his particular needs. After two weeks, John had had no investigations and his bed was needed, so he was sent home.

Once back at home, John remained listless, tired and kept losing weight. His worried carers eventually persuaded John to go to his GP where he was diagnosed with depression. He took anti-depressives but, crucially, was also given the time to talk about the things that were worrying him. That is unusual, because few psychological therapists have developed the skills to adapt their treatment to meet the individual communication needs of people with learning disabilities or autism.

The second time he went into hospital, because he continued to deteriorate, John had a hospital passport. This is an innovative idea to give hospital staff some guidance about his particular needs. He also had an understanding of what to expect and his depression had been treated. This time he had a successful hospital admission. He was diagnosed with cancer of the bowel, fortunately quite early. He was operated on and has made a successful recovery.

I do not just tell noble Lords that as a story with a happy ending—it could so easily have been different. The importance of this story is that you absolutely cannot adequately treat someone's physical illness without an understanding of that person as a whole. People with a learning disability are often unable to tell us in words about what is wrong and that is why we need to be alert to all the reasons why someone may be ill. But if we get that right, how much easier it will be to remember to ask other people about themselves as a whole.

Failures such as Winterbourne View and Mid Staffs happened because people were not seen as whole people. No one took the time to find out what the problem really was or how to fix it. In the case of Winterbourne View, it was so much easier to send people away to some specialist service than to really think about what was wrong.

You would not build a stool with only one leg and you absolutely cannot build an effective, equitable health system by focusing just on one aspect of health—by not giving parity of esteem to mental health. I have one word of caution. Our mental health is not all down to good assessment and good treatment. Prevention, and mentally healthy lifestyles, are key. That is why cross-government initiatives that recognise the relationship between, for example, poverty, unemployment and mental illness, are important.

In congratulating the noble Lord, Lord Layard, on securing this debate, which manages to coincide with World Mental Health Day, and for his sustained commitment to mental health, I would like to add my support to his suggestion that a senior Minister for mental health be appointed to work across all relevant departments. This is not just a matter for the Department of Health. Will our Government’s foresight in committing to achieve parity of esteem be demonstrable in our international policy and influence as well?

Finally, I hope that the Minister will agree with me that DfID really could help to influence attitudes internationally. There are estimates that 20% of the world’s population will be seriously depressed by 2020; yet only 1% of aid budgets has been committed to mental health services. Can that be right?

Health: Anorexia

Lord Carlile of Berriew Excerpts
Monday 25th February 2013

(8 years ago)

Lords Chamber

Read Full debate Read Hansard Text
Department of Health and Social Care
Baroness Crawley Portrait Baroness Crawley
- Hansard - - Excerpts

My Lords, the House is grateful to my noble friend Lord Giddens for bringing this desperately sad medical condition to our attention again this evening. While reliable statistics are a problem at the centre of this debate, and one that I shall return to, we understand from the National Institute for Health and Clinical Excellence that 1.6 million people in the UK are affected by an eating disorder, of which 11% are male, the vast majority being young women. Hearing and reading about the case studies of some of these young sufferers is a sobering experience. The self-loathing, hugely distorted body image and seeking after some control—any control—over their bodies, is enough to make one ashamed of the societal pressure that we have put on these mainly young people. The cycle of bingeing as a self-punishment for not losing enough weight, as they see it, is often accompanied by self-harming and, in extreme cases, a spiral into sectioning and force-feeding. Children, parents and the whole family are affected as the young person tries every device possible to starve themselves. Trust is replaced by fear and worry.

Why, we ask ourselves, should a significant proportion of our young people want to starve themselves in 21st century Britain in order to have some control over their lives? Is it the pressure put on them through advertising and the media to attain someone else’s idea of the perfect body? Is it the connections made by society between thinness, worth and value? Is bullying on the internet exacerbating the problem, and does the easy access to internet pornography reinforce a falsehood about the way young people, especially young women, should look? We should do all we can to reinforce young people’s confidence and sense of their worth. In a time of austerity, we should think once, twice and three times before applying cuts to young people’s services.

In conclusion, there is at present a lack of data detailing the number of people in the UK suffering from an eating disorder. Although the Department of Health provides hospital episode statistics, they include only those affected by eating disorders who are in-patients being given NHS treatment. Those figures leave out those being treated in the community, as out-patients and privately, and those who have not been specifically diagnosed with an eating disorder. Could the Minister ensure that the Department of Health conducts reliable surveys to provide us with accurate statistics in future? This condition can blight a young person’s life for years and years and, in extremis, kill them. We have to reinforce our work in this area and our commitment to our precious young people.

Lord Carlile of Berriew Portrait Lord Carlile of Berriew
- Hansard -

I congratulate the noble Lord, Lord Giddens, on initiating this debate. I agree with everything that has been said so far. This is an extremely important subject, which we should address more often, both in this House and in another place. In a very densely packed sentence in its College Report 170 of 2012, the Royal College of Psychiatrists said:

“Eating disorders are serious mental disorders with high levels of physical and psychological comorbidity, disability and mortality”.

It is not just a free-standing condition, in other words.

Anyone who has ever been close to a serious eating disorder knows that it can prove extremely debilitating to the whole family in which the sufferer lives. Indeed, it is an ordeal for families that can lead to permanent effects, even if the person concerned appears to recover, although there can be and sometimes is good recovery. If there is to be good recovery, it is vital that there should be early interventions, which must be the right ones—not just any intervention. In too many parts of the country, the wrong intervention is provided because the services needed for that person are simply not available. If a sufferer from anorexia needs cognitive behavioural therapy, it may damage them to give them drugs, and vice versa. It is a very subjective illness.

My perception of how the illness is treated throughout the United Kingdom is that it is very unevenly dealt with. For a number of years, I was a Member of another place for a constituency in rural Wales. Today, as then, the services available in rural Wales—in an area affected by its rurality—are far less clear and certain than in many urban areas.

In opening the debate, the noble Lord referred to the internet and I agree with him entirely about its effect. There are far too many sites on the internet that worship the slender. I am shocked, too—for I still sometimes see teenage magazines in my household—by the primacy given to thinness in magazines. These are everyday, perfectly respectable magazines, purportedly edited by responsible people. With my children, stepchildren and grandchildren, who regard me as quite a decent sort of shopper, especially if there is a credit card in my pocket, I sometimes go into well known clothing stores. Some barely have anything larger than a size 10, yet that is a very small size which probably truly fits a minority of young women in their undieting state. It seems shocking that we are not capable of addressing in a more realistic way the natural state of our young women and young men.

I also believe that there is a complete failure in outcome monitoring, as the Royal College of Psychiatrists has said. We would have more consistent services if we knew the results. We even talk about paying for prisons by results but we do not pay for psychiatric services by results. It seems to me that one way of disciplining the relevant providers of services would be to judge their results. If they do not perform properly, someone else is available to do the job. The principles applicable to child safeguarding standards, which include removing child safeguarding from local authorities in certain circumstances, should also be applied to psychiatric and psychological services, especially those affecting eating disorders.

There are some innovative ideas around which really are not all that innovative. In some respects, it is a case of returning to what happened in the past. However, I suggest to your Lordships that annual medical examinations of every schoolchild, up to and including year 11, could be introduced. Looking around the House, those examinations were certainly undergone by everybody who is here today. Very simple and rudimentary checks, such as weighing, measuring and looking at teeth and feet, tell you an awful lot about a young person, especially if the figures can be compared with those taken a year or a term ago. I do not understand why we have abandoned these rudimentary measures, apparently on the grounds of cost, when any cost-benefit analysis shows that this kind of examination saves a great deal of money further down the line.

Finally, I wish to say a word in favour of school nursing and school health services. They seem to have been abandoned in an awful lot of educational institutions, yet the rumour mill that takes children to the school nurse saves lives. I wish we could look at that more closely for the future. There is a great deal to do and we do not seem to be doing it.

Lord Brooke of Alverthorpe Portrait Lord Brooke of Alverthorpe
- Hansard - - Excerpts

My Lords, I, too, am grateful to my noble friend Lord Giddens for promoting this very important debate. I commence by declaring an interest as a trustee of the charity Action on Addiction, which provides day and residential accommodation for people suffering primarily from drink and drug addiction, but additionally we have many people who are cross-addicted. We deal with people with eating disorders, gambling difficulties, sex addictions, nicotine problems and a whole list of difficulties. Invariably, it is unusual to find a person with just one addictive issue that we have to address.

Anorexia nervosa is an extraordinarily difficult disease to deal with. The level of success when people leave at the end of treatment is often fairly small by comparison with the progress that can be made when dealing with people with drug and alcohol addictions and indeed, to a degree, with those with obesity. It is on the obesity side—the other eating disorders—that I wish to address my remarks. I address them as a founding member of the All-Party Parliamentary Group on Obesity, which is due to be launched in Parliament on 16 April and is long overdue. I hope that there will be a good response to it from the Government.

Last week, I was moved when I read the report highlighted in the Guardian which referred to the UK as the fat man of Europe. The full-page coverage of the report from the Academy of Medical Royal Colleges referred to the almost unstoppable growth of obesity and said that the number of people falling ill with it is almost beyond what can be coped with by the NHS. The Academy of Medical Royal Colleges is united—as are many other people—in seeing obesity as a problem of epidemic proportions and one of the greatest public health crises currently facing the United Kingdom.

I wish to pose a number of questions to the noble Earl on that topic. Does he agree with what the Academy of Medical Royal Colleges stated last week? What do the Government think about the report? The academy wants a dramatic increase in efforts to counter obesity and has made 10 recommendations for action. Time does not permit me to go into those tonight, but I specifically ask the noble Earl to address one of them. It asks the NHS to spend at least £300 million over the next three years to tackle the serious problem of the shortage of weight management programmes so that more patients can be helped in a supportive and sensitive manner. Since reading this, it is difficult to find the extent to which support is currently being given. As I will tell the Minister in a moment, people indicate that that support is declining rather than increasing.

I also heard in the course of my inquiries last week that an estimate has now been made that more than 70% of the million people employed by the NHS are classed as obese. Could the Minister please make an observation on that? As the principal person responsible for employing them, could he say what he intends to do about it, as it is an area in which the Government have a degree of responsibility?

Secondly, last week, prompted by the prospect of this debate, I went to visit an outfit in south London called Discovery. It is an organisation in the private sector, verging on a charitable operation, which provides two levels of service: contracts with the NHS to provide direct weight management programmes for individuals who are obese and in real trouble; and training for people in the NHS and related bodies who are endeavouring to start weight management programmes for those who are classed as obese. Discovery tells me that it is extraordinarily fearful about what the future holds for it under the changed arrangements set out in the Health and Social Care Act, which comes into force on 1 April. It says that the PCTs, which previously provided funding and contracts, are now disappearing. The contracts are also disappearing and not being renewed anywhere. Many weight management providers are facing the possibility that, although we have this growth in obesity, unless something happens in April, they may well go out of business later in the year. This is apparently a fear held not just within the organisation I mentioned but elsewhere as well. Therefore, I would like to know what the Minister intends to do about the immediate problem faced by people in this arena, when all the calls are for greater investment, not less.

Health and Social Care Bill

Lord Carlile of Berriew Excerpts
Wednesday 8th February 2012

(9 years ago)

Lords Chamber

Read Full debate Read Hansard Text
Department of Health and Social Care
Lord Walton of Detchant
- Hansard -

My Lords, in rising briefly to support the amendment so ably proposed by my noble friend Lord Patel and supported by the noble Lord, Lord Alderdice, I ask the Minister one very simple question. In Clause 1(1)(a) the Bill talks about the,

“physical and mental health of the people of England”,

and says that the health service must be “designed to secure improvement” in that health. What on earth could the objection possibly be to inserting in paragraph (b) at line 6 the unexceptional words listed in the amendment? They simply stress the crucial importance of mental as well as physical illness. How on earth could this be construed as doing any damage whatever to the Bill? It is something that I hope very much the Government can be persuaded to accept.

Lord Carlile of Berriew Portrait Lord Carlile of Berriew
- Hansard -

My Lords, I should like to say a word on behalf of those who have had to care for family members—often a young member of the family—who have suffered from severe mental illness. Those who have suffered that experience—and I am one—know how marooned they feel when they find that someone in their family has a serious mental illness. If somebody has a broken leg, you can locate the leg and take the medicine. If somebody has even cancer, it may not be curable but at least you have the knowledge of the location or locations of the cancer and the topical treatment that is to be applied to it.

The problem for families who experience in their midst mental illness is that no medicine can be applied topically to the place where the hurt or illness is taking place. The prognosis is uncertain, the mortality rate is depressingly high and usually at the hands of the sick person, and accessing good health service facilities is quite chancy, I am afraid. There is a real postcode lottery with mental health treatment. If, for example, you live in a remote rural area, only some therapies will be available and they may be the wrong therapies, particularly if the patient is a child or adolescent suffering from serious mental illness. Therefore, I simply say to the Minister who, as has already been said, cares deeply about these issues, that the adoption of this very simple amendment, as the noble Lord, Lord Walton, rightly described it, would send out such a telling message of support to families who have to care for people who suffer, perhaps temporarily, from mental illness that it would be seen as a declaration of purpose by this Government.

Baroness Whitaker Portrait Baroness Whitaker
- Hansard - - Excerpts

My Lords, briefly, from a lay perspective, I urge the Minister to take this amendment very seriously. I will not rehearse what I said at Second Reading from my experience on the board of the Tavistock and Portman clinic or from other walks of life about how widely damaging and destructive it is not to have parity, and how it needs to be explicit parity to change culture and to erode the stigma and the neglect associated with mental ill health. If the Government are rash enough not to accept the amendment—and I am quite sure that the noble Earl is not like that—I hope that there will be a Division. If the debate lasts until five o’clock, when I am committed to chairing a meeting, I hope that the House will accept my apology but I will return to vote.

Health: End-of-life Care

Lord Carlile of Berriew Excerpts
Monday 16th January 2012

(9 years, 1 month ago)

Lords Chamber

Read Full debate Read Hansard Text
Department of Health and Social Care
Earl Howe Portrait Earl Howe
- Hansard - - Excerpts

My Lords, the end-of-life care strategy that we are pursuing, published by the previous Government, highlighted the need for a cultural shift in attitude and behaviour related to end-of-life care within the health and social care workforce. The noble Baroness is quite right that this is an issue. In partnership with the national end-of-life care programme, we have taken forward a number of initiatives to develop the workforce’s understanding. We have commissioned the development of an e-learning package, which is turning out to be popular, that includes advance care planning and communication skills. Core competences and principles for end-of-life care have been developed, and a number of pilots have been taken forward in that area. A document called Talking About End of Life Care: Right Conversations, Right People, Right Time has been published and was completed early last year. There are a number of initiatives in this area.

Lord Carlile of Berriew Portrait Lord Carlile of Berriew
- Hansard -

Does my noble friend agree that the new NHS commissioning arrangements are such that they give an opportunity for advance directives to be collected and collated in a coherent way by general practitioners? Will he also confirm that, whatever advance directives are given, the need to provide comfort to patients remains a duty on clinicians?

Earl Howe Portrait Earl Howe
- Hansard - - Excerpts

I agree with my noble friend on both counts.

Health: Pathfinders

Lord Carlile of Berriew Excerpts
Thursday 12th January 2012

(9 years, 1 month ago)

Lords Chamber

Read Full debate Read Hansard Text
Department of Health and Social Care
Earl Howe Portrait Earl Howe
- Hansard - - Excerpts

My Lords, my understanding is that procurement law, which already applies in the NHS, is certainly part of the learning sets that clinical commissioning groups have been provided with. I would be delighted to supply the noble Baroness with further information but I do not have it in front of me.

Lord Carlile of Berriew Portrait Lord Carlile of Berriew
- Hansard -

Can my noble friend confirm that the NHS will take fully into account the success of pilot pathfinder projects in places as diverse as Newcastle, Swindon and Bedfordshire so that the NHS itself encourages the development of pathfinder projects? Will he also take into account the fact that GP co-operatives were very successful as long as they lasted, but the discouragement they were given by the previous Government brought a disastrous end to some very good schemes?

Earl Howe Portrait Earl Howe
- Hansard - - Excerpts

I am grateful to my noble friend. I think everybody agrees that integrating services, however one defines that—although the common denominator is surely from the point of view of the patient—is a good thing. We do not wish to lose sight of the lessons that have been learnt so effectively in the places mentioned by my noble friend. It is true that other areas have yet to catch up. We recognise that, and the focus over the next 12 months will be very much on sharing the lessons that have been learnt by the pathfinders that we know are working well.