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)|
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.
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.
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.
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.
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.
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.
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.
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.
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.
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?
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.
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.
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.
“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?
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.
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.
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.
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.
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.
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.
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.