End of Life Care

Baroness Massey of Darwen Excerpts

Tuesday 14th March 2017 Lords Chamber

[Baroness Massey of Darwen (Lab)]

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?

Abortion (Disability Equality) Bill [HL]

Baroness Massey of Darwen Excerpts

Report stage (Hansard): House of Lords
Friday 24th February 2017 Lords Chamber

[Lord Alton of Liverpool (CB)]

My Lords, I will speak against the amendment and support the noble Lord, Lord Shinkwin, in bringing the Bill forward. The noble Baroness, Lady Tonge, and the noble Baroness, Lady Barker, who is sitting in front of her, will not be surprised that we take a diametrically opposed view of this and not for the first time in our lives. They will recall that the reason I left their party was their proposition that abortion should become party policy rather than a conscience question. I have always been saddened that this issue should be politicised. Diametrically opposed views can be sincerely held for perfectly good reasons.

The noble Baroness, Lady Tonge, and the noble Lord, Lord Winston, have spoken as doctors. I am only the humble father of a doctor but I had the chance earlier this week to speak to two eminent doctors, one a former president of one of the royal colleges and the other a former president of the BMA, both of whom are opposed to the amendment. For one this is because of the danger of misdiagnosis. She gave me the specific example of a baby whose mother had been told it had a fatal foetal disability, but this did not turn out to be the case when it was born. The other said that it is far better to go ahead with the pregnancy and for the baby to be delivered in order to help the mother at that stage. I will come back to that point in a moment, because it is borne out by the guidance of the Royal College of Obstetricians and Gynaecologists in the submission it made on this subject in 2010.

We can disagree about these things, but let us at least accept that there is a disagreement. I wish that the noble Lord, Lord Winston, had been able to bring forward his amendment in Committee, when we would have been able to have a more robust argument and discussion about it. It is strange that this amendment should be laid before your Lordships’ House at 24 hours’ notice before Report. Since it has been, I have done my best to discuss it with others who know more about these things than I do. In 1990, when a Member of another place, I moved my only amendment in 18 years in the Commons on which there was an equality of votes. Mr Speaker Weatherill—who became Lord Weatherill—had to use his casting vote for the status quo. He was one of my two sponsors when I became a Member of your Lordships’ House and I know through subsequent discussions with him how disturbed he was that he was not able to follow his conscience that day but had to follow precedent in upholding the status quo. My amendment sought to ensure that, in the 1990 amendment to the 1967 Abortion Act, the nature of the disability would be placed on the green form authorising the abortion. I was challenged by Harriet Harman who said that it was scaremongering for Professor John Finnis, one of the country’s leading experts on jurisprudence, to suggest that the legislation as drafted could lead to abortion on the grounds of cleft palate. As noble Lords know from the figures that have been produced, there have been abortions post-24 weeks’ gestation on the grounds of cleft palate. Notwithstanding the examples the noble Lord gave a few moments ago, 90% of all babies diagnosed with Down’s syndrome in this country are now routinely aborted.

I have never described the Department of Health as being responsible for eugenics and I would never do that, nor do I believe that doctors in this country are. The noble Lord, Lord Shinkwin, has said that society slides into eugenics when these things become normative. Therefore, I hope that when the noble Lord replies to the debate, he will tell us exactly what the list of disabilities is that cannot be diagnosed before 24 weeks’ gestation. Despite my own strongly held views about the law—indeed, 8 million abortions have taken place in this country since 1967, there are around 600 every working day and one in five pregnancies is now ended on those grounds—this Bill is not about that. This Bill is about equality legislation and discrimination, and whether a child with a disability should be treated differently from an able-bodied child.

I simply point out to your Lordships that there is a certain irony, as the very last words spoken by the Minister at the Dispatch Box in the previous debate on a Bill about car parking were about ensuring equality of opportunity for disabled people to be able to park in car parking spaces. All Members of your Lordships’ House have properly campaigned over the years on the rights of disabled people, and have a huge reputation in this country for asserting those rights. Is there not an inconsistency if we campaign for ramps to be attached to public buildings in this country but say that it would be better that someone with a disability had not been born in the first place? What sort of message does that send?

I do not think that people like me can put forward arguments such as this if we are just anti things. One of the things in which I got involved in my own city of Liverpool was the building of the first baby hospice in the country, Zoe’s Place, of which I continue to be a patron, and others have since been opened. It was built specifically to help mothers in this situation. You have to be positively for the unborn child but for the mother as well in these tragic and very difficult circumstances.

I admire medicine when it is at its best. The noble Lord, Lord Winston, and I sometimes disagree. Nevertheless, he knows that I admire hugely a lot of the work that he has done. When noble Lords such as the noble Lord, Lord Winston, are able to develop—as they are doing—surgery in utero to deal with things such as spina bifida, that is good science and good medicine marching hand in hand with good ethics. However, if I were to say to the noble Baroness, Lady Barker, for instance, that I was in favour of abortion beyond 24 weeks for reasons such as gender, race or—if it could be diagnosed—orientation, what would your Lordships say to me? I hope that they would rebuke me. That is why I argue that we should treat disability in precisely the same way as those issues.

I said that I would return to what the Royal College of Obstetricians and Gynaecologists had to say. There were two things, one of which shocked me, when I read the details of what happens in late abortion of this kind. This is the college’s description, not mine:

“Intracardiac potassium chloride … is the recommended method to ensure fetal asystole. After aspiration of fetal blood to confirm correct placement of the needle, 2-3 ml strong … is injected into a cardiac ventricle. A repeat injection may be required”.


It goes on to describe other ways of doing this. This is a late abortion. Babies have been born and lived from 23 weeks’ gestation, so this is beyond viability that we are talking about. The college also states:

“Most women will be unaware that, within the NHS, medical abortion induced by drugs is the procedure usually offered after 14 weeks of gestation. The prospect of labouring to deliver a dead fetus will be difficult for many and discussions about the procedure will require sensitive handling by experienced staff. Although the prospect of labour in these circumstances is especially daunting, some women gain some satisfaction from having given birth and have welcomed the chance to … hold their baby”.


The college goes on to talk about the options that need to be offered for pain relief,

“and whether the woman might want to see the baby and have mementoes such as photographs and hand and footprints … She will … be made aware of information from a postmortem … These discussions are likely to be distressing for the woman and her partner”.

So let us be very clear that this is a tragedy for everyone involved.

I turn to the noble Lord’s amendment. It states that,

“there is a high probability that the fetus will die”.

We are drafting legislation here. What does this mean? Is the probability 99.99990%, or 50%? How should a high probability be objectively defined in law? Why is that not specified in the wording of the amendment? I am very disturbed by the fact that the noble Lord’s amendment says that you may go on to carry out these procedures “shortly after delivery”, when the baby has been born alive. Is this a matter of minutes, hours, days, weeks, months or, arguably, even years? It needs to be clearly defined in law, otherwise it will be interpreted far too widely. That is why the amendment should have been brought forward in Committee, when we could have had a proper discussion about it. However, I hope that the amendment will be resisted and that the Bill in the name of the noble Lord, Lord Shinkwin, will be given a safe passage so that it will have a chance to go forward and there can be a proper debate about it in another place.

[Baroness Massey of Darwen (Lab)]

My Lords, I intended to speak much later but I have to emphasise something which the noble Lord, Lord Lester, said, that we often forget. This is not and should not be a political issue. It is often about the life and death of women. The remark made by the noble Lord, Lord Alton, for whom I have the deepest respect, about gender and race in comparison to disability, is unfortunate, to say the least.

We have to remember the history of abortion in this country. At one time, women who could not obtain an abortion for legal reasons resorted to what were called back-street abortions or self-abortions. Those were dangerous and often humiliating. Do we really want to go back to that? The Bill, if it is carried, could mean going back to that for women. I suspect that if our laws were changed to deny abortions at any stage we could see women’s lives put in danger, and that would be completely abhorrent. For those reasons and others, I cannot support the Bill.

I have the deepest respect for the noble Lord, Lord Shinkwin, but this is an emotive issue, and much has been said already. First, on disability, I read something recently by the disability rights advocate, Professor Tom Shakespeare, who himself has a disability. He said that prenatal diagnosis is not straightforwardly eugenic or discriminatory:

“Nor should we interpret a decision to have … a termination as expressing disrespect or discrimination towards disabled people. Choices … are not incompatible with disability rights”.


I agree with him.

Our laws on abortion, which we are fortunate to have, have been well debated and carefully constructed. They are supported by professional bodies and by the vast majority of the general public. Women overwhelmingly support testing for abnormality in a foetus, knowing that the result may cause them immense distress and difficult decisions.

We know that some conditions cannot be diagnosed within 24 weeks. In fact, some can be diagnosed only within the third trimester. I find the Bill quite punitive. We know that parents find a decision on abortion difficult and distressing. They think not only of themselves —they are not being selfish—but of the whole family, possibly including children who have already been born. Such parents need support, advice and often grief counselling. It is not a simple matter. Medical services take account of this distress—my noble friend Lord Winston spoke eloquently about that—and I know some parents who have been advised and helped to hold a funeral for the aborted baby.

While this is an emotive Bill, we have to consider the rights of women and of the family, and think about the impact that it might have in particular on women who used to go for those back-street abortions.

Mental Health: Young People

Baroness Massey of Darwen Excerpts

Thursday 9th February 2017 Grand Committee

Asked by

[Baroness Massey of Darwen]

To ask Her Majesty’s Government what action they plan to take in the light of the Association for Young People’s Health briefing There for you which discusses the role of parents in supporting young people with mental health problems.

[Baroness Massey of Darwen (Lab)]

My Lords, I am delighted to have secured this debate on the very important and pressing issue of young people and mental health, and the importance of parental support. The report is called There for You—an apt title, as I shall discuss. I am grateful to the Association for Young People’s Health, of which I am a proud patron, for presenting the results of its recent survey so cogently.

I am very happy to see that the noble Lord, Lord O’Shaughnessy, is responding to the debate. I am aware of his interest in young people and we have often discussed their well-being in relation to character education and the links to personal, social and health education and life skills education. My noble friend Lord Patel also has a fine track record in supporting the development of initiatives in mental health. Many noble Lords speaking today have a variety of perspectives on this, so I look forward to a lively debate.

I will talk about some of the report’s background and proceed to repeat points made by parents. I will then seek the Minister’s acceptance of these points and his support. I recognise and appreciate that much has been done in recent years in recognition of young people’s mental health needs. I salute Norman Lamb MP for his tenacity and excellent work on this. The Prime Minister, of course, mentioned mental health last week.

I hosted the launch of this report. There, I talked to many parents who have the experience of supporting a son or daughter with mental health needs. They expressed agonies of feeling helpless, guilty, angry and sad at the lack of support. Many had sought private counselling as there was nothing available in the state system. The report estimates that 36% of parents are in this position. We must remember that young people are not just teenagers, but include children of primary school age and younger. These children may show disturbing behaviour—I do not mean just naughty behaviour, which is perfectly normal, but distress, which needs deciding upon and doing something about if it is not to become more serious.

Some of the parents had formed local parent groups. The question occurred to me: what if you cannot afford to get help? What if you do not have, for whatever reason, the initiative to set up a group? It seems that you just get left behind, feeling more and more distressed. I will give two moving quotations from the report. First, a parent said:

“It must be incredibly hard for a young person who’s in crisis themselves to then look at the one person they trust, who is sitting on the floor sobbing … thinking I have no idea what to do, and nobody’s helping me”.


Secondly, a young person said that,

“if they were to empower my mum … then I would feel more empowered too”.

These are real cries for help.

The report is part of a wider parenting project and reflects a survey of parents’ networks co-ordinated by Young Minds, which also does excellent work on the broad aspects of young people and mental health. A thousand parents were involved—not parents who had no voice at all, or those who are perhaps less engaged with their young person’s mental health problems, but it is a starting point for finding out what parents think. A fuller profile of the parents taking part is given in the short report.

The need for such research and action is clear. Half of all adult psychiatric disorders start by the age of 14. Only a quarter of young people referred to specialist services will be seen. Only 0.7% of the total NHS budget is spent on mental health services for the under-18s. Things are simply not changing fast enough, despite all the excellent recommendations and reports. I ask the Minister: how might this be improved? Self-help is good, but it is not sufficient. Parents and young people need a better deal. It is so much better to treat such problems early, rather than wait. Costs, as well as human misery, inevitably increase the longer there is lack of support.

Parents say that there is a problem of waiting times for treatment. They are often left alone to cope. They may have to take time off work, or go part-time or give up work. They struggle to find help or they may feel that they have something to offer but get sidelined. Many parents I talked to said that they needed more guidance on how to offer help to the young person in need. Dealing with a young person in crisis can leave a parent feeling helpless, guilty and under-confident. Parents and families—such problems affect the whole family—are desperate. Parents in the survey made suggestions about how things could be improved.

I will recount some of their ideas. The first is the development of parent support groups. Parents are dealing with the stresses of their children’s lives constantly. Of course, parenting has its joyful aspects, but come a crisis, parents and families often need help rather than having to cope on their own. Support groups are one way of helping. When I was chair of the National Treatment Agency for Substance Misuse some years ago—the noble Lord, Lord Patel, will remember that—support groups for users, parents, grandparents and families were prominent in aiding recovery and, frankly, keeping people sane. Some of those groups were supported by local authorities. Support could include practical advice, with a dedicated worker to provide support. Would that not be a way of helping parents with children and parents struggling with crises, especially mental health crises? Support could include practical advice on where to go next in finding a CAMHS worker, for example, or other consistent key workers. Consistency is really important here. Having someone with professional expertise alongside them would be a boon to parents.

Secondly, parent support workers attached to schools were suggested as another means of helping parents. Such a person might, for example, manage the interface between services such as CAMHS, the school and the home. I certainly advocate a role for schools here. I have long been convinced that much stress is created in schools by overtesting and overpressurising. That is what children say. There is still no requirement for schools to develop coherent programmes for delivering ways of coping, such as personal, social and health education, character education, life skills—whatever we call it, children need it.

Thirdly, parents stressed the need for and importance of early intervention—help before the breaking point. A triage-based service for all levels of mental health issues is important, not just when they become crises. Parents also suggested that out-of-hours support such as telephone helplines could be important. They thought that parents could help design services and delivery. Involving those dealing with problems is always a better way of getting things right—my words, not theirs.

In reflecting on the results of this extremely helpful and powerful survey, I do not underestimate factors such as socioeconomic status, poverty and family situations. But any child, from any stratum of society or any family, can develop mental health problems. We must recognise that, and act on developing the valuable role that parents can play as partners in such situations. There may be some costs involved, but nothing extraordinary. In pure cash terms, the savings would be enormous in the long run. In terms of distress, they would be even more enormous.

Will the Minister reassure us that the Government have their eye on this, and will he personally intervene to encourage initiatives to help parents and young people? I know that he knows it makes total sense.

Abortion (Disability Equality) Bill [HL]

Baroness Massey of Darwen Excerpts

Committee: 1st sitting (Hansard): House of Lords
Friday 27th January 2017 Lords Chamber

Moved by

[Baroness Massey of Darwen]

After Clause 1, insert the following new Clause—
“Impact of this Act
(1) The Secretary of State must, at a time the Secretary of State considers appropriate, undertake a review of the impact of this Act on disabled children, their families and carers, and the provision of support services.(2) The Secretary of State must make arrangements for a report of the review to be laid before each House of Parliament.”

[Baroness Massey of Darwen (Lab)]

My Lords, my amendment is very simple. It simply seeks a review of the impact of the Bill on disabled children and their families and carers, and it seeks to ensure that support services are appropriate. I think it is a very sensible amendment; we should be reviewing what we do and taking great care to ensure that disabled people have the support they need. I thank the noble Lord, Lord Shinkwin, for giving us the opportunity to discuss his Bill. I am aware of the complexities and sometimes the anguish that surrounds prospective parents making a decision about abortion. I am also aware that the noble Lord, Lord Shinkwin, has very sensibly consulted on the Bill. I shall not go into disability rights. I have huge respect for people with disabilities and their families, who often achieve brilliantly. I am very grateful to the noble Lord, Lord Shinkwin, for meeting me this morning to talk about my amendment.

This past week I was at Strasbourg, at the Council of Europe. We discussed new technologies to prevent abnormality in the foetus, often from genetic problems. One of those present supporting further research described the dilemma of parents. He and his wife discovered that she was carrying a child with Down’s syndrome. They decided to allow the pregnancy to continue. My position on abortion is very simple: the final decision is the woman’s choice. I realise that such women now often discuss such a crisis with their partner; sometimes not. That should remain their prerogative. Abortion is not, of course, always linked to disability. The Bill would remove Section 1(1)(d) of the Abortion Act 1967, which allows for an abortion when,

“two registered medical practitioners are of the opinion … that there is a substantial risk that if the child were born it would suffer from such physical or mental abnormalities as to be seriously handicapped”.

If the Bill were to become law, parents would no longer have the option to end a pregnancy after 24 weeks when faced with a serious antenatal diagnosis, including in those cases where there is no realistic possibility of a pregnancy resulting in the baby surviving after birth. I think that is a real problem.

The Royal College of Obstetricians and Gynaecologists, a very learned body, has addressed the issue of foetal abnormality. Its report provides information to assist doctors and other health professionals in supporting women and their families when an abnormality is diagnosed. Since the last guidance was issued in 1996 there have, as we all know, been great advances in the detection of congenital abnormalities, resulting in early diagnosis and clearer indications for the offer of termination of pregnancy. The law relating to termination of pregnancy has not changed since 1990, although it has been tested in a number of specific cases. The 1967 Act, as amended, sets out the grounds and time limits for termination of pregnancy for foetal abnormality. Interestingly, there is no legal definition of “substantial risk”, or of “serious handicap”. An assessment of the seriousness of a foetal abnormality is considered on a case-by-case basis, taking into account all available clinical information.

Bodies have discussed this issue of foetal abnormality endlessly and it is now time to review what has been going on in relation to disabled people. Some may say that I am adopting a very clinical position. I am not. As I said earlier, I recognise that decisions on abortion may cause emotional stress, strain and anguish. My ethical stance, as I said, is that it is a woman’s right to choose. Therefore, I cannot accept many of the precepts of the Bill, much as I respect the noble Lord, Lord Shinkwin. My amendment simply seeks rational and objective evidence of the impact on disabled children to allow us to discuss such impact in a more analytical and considered way. I beg to move.

[Lord Mackay of Clashfern (Con)]

My Lords, the idea of having a review of the effect of legislation strikes me as a very good proposition in general, and in particular in relation to this Bill. Obviously, as the noble Baroness has explained, the precise consequences of the Bill, which I congratulate my noble friend on bringing forward, are not very easy to see, because there are overlapping provisions in the Abortion Act which might deal with some aspects at least of the particular circumstances that the noble Baroness referred to. In my judgment, this is a useful amendment and a similar principle might well apply in other legislation as well.

Young People: Self-Harm

Baroness Massey of Darwen Excerpts

Tuesday 6th December 2016 Lords Chamber

[Lord Prior of Brampton]

My Lords, I think something is seriously wrong, and something has been seriously wrong since 1948. Mental health has been a Cinderella service, and children’s mental health has been, if anything, even worse. We are committed to spending an extra £1.4 billion; we are spending more money on mental health liaison services in A&E departments; and we are putting in 56 new beds in CAMHS units to prevent the out-of-area treatments or what have you. But we have a huge way to go, frankly.

[Baroness Massey of Darwen (Lab)]

My Lords, is the Minister aware of a new report by the Children’s Society on adolescent neglect, which suggests that parental and societal failure to admit to the needs of adolescents and address those needs is having a detrimental effect on adolescent health, especially mental health? Does the Minister agree that it is the case that parental and societal neglect is vitally important and should be addressed? Does he have any comments on how to address it?

[Lord Prior of Brampton]

There is no question about it that parents and society are a critical part of any way to tackling childhood mental health problems. There is no doubt about that. We have just published a work for parents on how to deal with the issue of self-harm, for example, when it is your own child. It is a hugely complex area, frankly. Social media are a big part of this and family break-ups are a big part. I am not a psychiatrist, but when you are going through a period of huge emotional turbulence, cutting yourself or inflicting physical pain on yourself gives you some form of control. It is too complicated and too difficult for me to answer that question as well as I would like to.

Breast Cancer: Innovative Drugs

Baroness Massey of Darwen Excerpts

Monday 24th October 2016 Lords Chamber

Asked by

[Baroness Massey of Darwen]

To ask Her Majesty’s Government whether the Accelerated Access Review will address the availability of innovative drugs for breast cancer.

[The Parliamentary Under-Secretary of State, Department of Health (Lord Prior of Brampton) (Con)]

My Lords, the report of the Accelerated Access Review, published today, makes recommendations to the Government on reforms to accelerate access for National Health Service patients to innovative medicines and medical technologies, which may include drugs for breast cancer, making our country the best place in the world to design, develop and deploy these products. I warmly welcome publication of the report. The Government will consider the recommendations in the review carefully and provide a formal response in due course.

[Baroness Massey of Darwen (Lab)]

I thank the Minister for that Answer. I am aware that, fortuitously, the final report of the Accelerated Access Review was published this morning, and, again, it is fortuitous that Thursday of this week will be breast cancer awareness day. The Secretary of State for Health has commented that we wish to make the UK the best place in the world to develop new drugs, as the Minister said. Do the Government therefore intend to commit to full delivery of the Accelerated Access Review, and what estimates have been made of the resources that will be necessary for this, if any resources are required?

[Lord Prior of Brampton]

We received the report today. We warmly welcome its principles and believe that by combining the great depth of our research base in this country with the NHS, which is the largest single integrated provider of health services in the world, we can create a world-leading life sciences base in this country. The detailed response to the report and the costs attached to it will come in due course.

Health: Alcohol

Baroness Massey of Darwen Excerpts

Thursday 12th May 2016 Lords Chamber

[Baroness Finlay of Llandaff (CB)]

My Lords—

[Baroness Massey of Darwen (Lab)]

My Lords, does the Minister agree that attempts to alert the general public are often too little, too late?

[The Lord Privy Seal (Baroness Stowell of Beeston) (Con)]

My Lords, it is the turn of the Cross Benches.

NHS (Charitable Trusts Etc) Bill

Baroness Massey of Darwen Excerpts

Friday 26th February 2016 Lords Chamber

Moved by

[Baroness Massey of Darwen]

That the Bill be now read a second time.

[Baroness Massey of Darwen (Lab)]

My Lords, it is a great pleasure to sponsor this Bill and present it to your Lordships today and seek your support. It is an honour to follow the passage of the Bill in another place, where there was unanimous and enthusiastic support. The debates were led ably and sympathetically by Wendy Morton, MP for Aldridge-Brownhills. It is entirely appropriate that a Bill involving Peter Pan should be introduced by an MP called Wendy. I thank the Minister and Wendy Morton for meeting me, and Department of Health officials for their excellent guidance. I thank also Great Ormond Street Hospital and the Association of NHS Charities for their help. Most importantly, I thank the Library for its most useful briefing pack.

I very much look forward to the maiden speech of the noble Lord, Lord Bird. We have discussed the Bill and I know that he is committed to its principles. I also look forward to the Minister’s response. I know that he has connections of long standing with Great Ormond Street. I am delighted that my noble friend Lady Blackstone is taking part today. She has been significant in ensuring that issues relating to NHS trusts are reconsidered. She is of course now the chair of Great Ormond Street Hospital for Children NHS Foundation Trust.

The Bill may seem complex but it is, in fact, fairly simple and its aims are clear. It seeks to do two things. First, it makes provision to remove the Secretary of State’s powers to appoint trustees for NHS charities linked to NHS bodies in England, and makes consequential amendments to the removal of those powers. Secondly, it makes provision to amend sections of the Copyright, Designs and Patents Act 1988 to transfer to the new Great Ormond Street Hospital Children’s Charity, to be known as GOSH, the right to a royalty in relation to performances or publications of the play “Peter Pan”. There are other related and transitional provisions.

At the moment, the right is in the hands of special trustees appointed by the Secretary of State, and I will go into this in greater detail in a moment. It is worth adding that when the NHS was established there was no Charity Commission, and structures for charities were quite different. All that we seek now is a level playing field to improve the ability of charities to work more efficiently to raise money and spend it to the advantage of children, in the case of Great Ormond Street, and of clients generally.

Noble Lords will know that JM Barrie, the author of “Peter Pan”, made a bequest in 1929 to Great Ormond Street Hospital so that it might benefit from royalties. As I reread “Peter Pan” over the weekend I realised that it is actually a political thriller, set largely in Neverland and full of idealism, revenge, rescue and battles. We probably have a number of potential cast members here today. Who would play Peter Pan, who Wendy and who the Lost Boys? Would the Minister fancy himself as Captain Hook? Will Tinker Bell suddenly alight on the Dispatch Box? How would the doorkeepers deal with the ticking crocodile?

I shall not go into the Bill in minute detail—noble Lords will be aware of its implications—but I shall set out the main thrusts. I shall give a brief history and then look at the policy issues for the two components of the Bill. First, I shall discuss issues relating to the Great Ormond Street Hospital Children’s Charity, GOSH. Since 1929, Sir James Barrie’s gift has provided a great deal of income to the charity, which, as we all know, provides superb services for sick children and their families.

In 1987, the former Prime Minister Lord Callaghan successfully proposed an amendment to the Copyright, Designs and Patents Act 1988, giving the charity the unique rights to royalties from the publication or performance of “Peter Pan” in perpetuity. However, there were problems, and my noble friend Lady Blackstone raised the need to amend legislation to benefit from the Barrie bequest during the passage of the Deregulation Act 2015. The Government agreed to introduce legislation, which is what the Bill is all about. The problem is that the so-called Peter Pan rights are vested in special trustees appointed under NHS legislation for Great Ormond Street Hospital. The Department of Health made an agreement with the hospital whereby the existing NHS charity transferred most of its undertaking to an independent charitable company limited by guarantee. That new company was also appointed as corporate special trustee of the existing NHS charity under the Act in 2006.

At present, the GOSH charity is unable to fully complete the conversion to an independent charity as the NHS charity has to be kept in existence until the Copyright, Designs and Patents Act is amended. This complication, according to GOSH, presents a huge risk that legacies to the charity may fail, thus significant charitable donations could be lost to the provision of healthcare at Great Ormond Street Hospital. I know that the GOSH charity has adopted a five-year strategy, aiming to raise £500 million in that period to benefit patients, their families, the hospital and research. If the Bill were not passed, the charity would not be able to complete its move to independence. The hospital would therefore have to run two charities, one the independent arm and the other the existing one, into which royalties from “Peter Pan” would be transferred. This is clearly a waste of time, energy and money, with more duplication of effort and more bureaucracy. That is why the Bill is so important.

I will now briefly go into issues for NHS charities in general. NHS charities are those regulated by charity law but which are linked to NHS bodies and bound by NHS legislation. They are charitable trusts. Their trustees are an NHS body such as a foundation trust, or trustees appointed by the Secretary of State for an NHS body. The Secretary of State has statutory powers to transfer trust property held by NHS charities. Such charities are distinct from independent charities established solely under charity law, and funds donated to the NHS must be held separately from Exchequer funding provided by the taxpayer. NHS bodies can hold properties on trust for any purpose relating to the health service. Charitable funds can be held by NHS trusts, special health authorities, foundation trusts, clinical commissioning groups and NHS England. Boards act as corporate trustees of the charitable funds.

Since 1973, the Secretary of State has had powers to appoint special trustees to manage charitable property on behalf of hospital boards. In 1990, powers for the Secretary of State to appoint trustees to NHS trusts were enacted and are now extended to other NHS bodies, as set out in the National Health Service Act 2006. The NHS Trust Development Authority oversees the appointment and removal of trustees. Separate trustees can be appointed if a business case can be made. The situation, as noble Lords will see, has become complex and somewhat unwieldy.

In 2011, the Department of Health conducted a review and consultation on NHS charities. In consequence of this review, the department announced its intention to allow NHS charities to move, with safeguards, to independent status and be regulated by the Charity Commission. There is detailed guidance on this, which I will not go into.

The bottom line of the Bill is that the Secretary of State will no longer appoint trustees, although he or she can, by order, appoint trustees to hold trust property in respect of certain NHS bodies. Clause 1 sets out the removal of the Secretary of State’s powers; Clause 2(1) discusses supplementary provision; Clause 3 discusses the transfer of the rights to the royalties from the play “Peter Pan”; Clauses 4, 5 and 6 detail the extent, commencement and the Title of the Bill; and there are two schedules. Thus, although the Bill is short, it is significant. It will sweep away bureaucracy, clarify and simplify the position of trustees and NHS charities and will give charities more freedom to operate.

In the film “Peter Pan”, Peter Pan says:

“To live will be an awfully big adventure”.

The Bill will ensure that trusts, such as the Great Ormond Street Hospital trust, are freed from undue bureaucracy to spend more of their charitable donations on patients and, we hope, allow more children to live for that big adventure. I recommend the Bill to your Lordships, I thank all noble Lords who have stayed for this Friday session, and I look forward to their speeches and to the Minister’s reply. I beg to move.

--- Later in debate ---

[Baroness Massey of Darwen]

My Lords, when I told my husband of 50 years—and I took a long time to say this to him—that as part of our wedding anniversary today I would be leading a Bill in the House of Lords, he said a lot of things. I can only repeat some of them. One of them was, “How can anybody do that on a wedding anniversary?”. Of course, I pleaded parliamentary timetabling, and I think I am forgiven, so I look forward to another wonderful day today and a lovely dinner in peace in our home town of Lewes. However, I am actually glad to have been here today because I have enjoyed myself. I have had great support from the House for the Bill, and I shall come on to the Minister’s comments in a moment, but I have also learned a lot, not only about charities but also about some of the people in the House.

I feel for the noble Baroness, Lady Barker, who said that it has been a terrible year for charities. I have worked in charities and been a trustee of several. Charities constantly have to look at themselves and embrace reform, without losing sight of their charitable objectives and what they are there for, which is to benefit clients. The Bill is part of that process, certainly for Great Ormond Street, but also for other charities which will be affected by the Bill. Some important issues have been brought up today and I will run through a few.

The noble Lord, Lord Crisp, talked about the importance to charities of innovation. Charities are good at innovating, but as was said later, they actually need some framework on which to be innovative. I thank the noble Baroness, Lady Blackstone, for her work on this issue over many years. She paid very moving tribute to GOSH and gave examples of supporting the charity and what it gives the hospital. The noble Baroness, Lady Barker, reminded us of the work of Barnardo’s. We should never forget Dr Barnardo, a great social innovator who talked about the need for reorganisation and reform of charities.

What can I say about the speech of the noble Lord, Lord Bird? A lot, but I will just say one or two things. It was extraordinary, inspiring and enthusiastic. It emphasised serious points about the need for governance and opportunity. His many wise words made me think about how, yes, you can use poverty as opportunity, giving a hand up, not a handout. He is a very good example of this initiative—triumphing over background. We talk about social mobility a lot in this House and today we have seen it and I thank the noble Lord for that.

The noble Lord, Lord Patel, in his short but, as ever, effective speech, spoke eloquently about the work of charities, particularly children’s charities. I am so glad that the noble Lord, Lord Cormack, spoke in the gap with his usual wisdom and charm. He and I share two passions: one is the House of Lords and its work; and the other is frustration over abbreviations. We both sit on a committee where we fume at the number of abbreviations with which we are presented that we do not understand.

The right reverend Prelate the Bishop of Bristol talked very aptly about passing on stories and themes. This is a story and theme about sick children which is very relevant and important to all of us, and on which Great Ormond Street and other children’s hospitals in this country—we must not forget the other hospitals—do superb work.

My noble friend Lord Hunt talked about the role of trustees. One must not forget either that trustees do an amazing job of holding charities to account and together, and supporting them.

I thank the Minister very much not only for meeting me before this Bill came to your Lordships’ House but for his unequivocal support for it, which he stated today. I realise that he has many personal contacts with GOSH, which he shared with the House. I thank him for his support.

Bill read a second time and committed to a Committee of the Whole House.

Mental Health Services

Baroness Massey of Darwen Excerpts

Thursday 25th June 2015 Lords Chamber

[Baroness Massey of Darwen (Lab)]

My Lords, I thank my noble friend Lady Thornton for introducing this debate. She has highlighted many of the problems facing young people that are set out in the Care Quality Commission report, as has the noble Baroness, Lady Walmsley. Both have said that young people are particularly vulnerable and badly served.

As we can see from the excellent Library briefing, there have been numerous deliberations about young people’s mental health from a variety of sources. Importantly, the then Minister, Norman Lamb, said earlier this year that these set out a compelling economic case for change, and change is what we have to focus on. The All-Party Group for Children, which I chair, has conducted an inquiry into the development of good mental health and emotional well-being for young people in the face of life’s challenges. I shall say a little bit about that but will first ask the Minister: what is happening to all the initiatives for young people and reports that have come out in recent years?

I want to mention briefly the report published by the Association for Young People’s Health, based on key data on adolescence. The report points out that half of all cases of psychiatric disorder start by the age of 14, and three-quarters by 24. Around 13% of boys and 10% of girls have mental health problems. The most common issue for boys is conduct; for girls it is emotional difficulties. Mental health issues include eating disorders, attention deficit and hyperactivity disorder, behavioural problems, self-harm and, in extremis, suicide. Mental ill-health is on a spectrum from low-level to severe. It is not necessarily an extreme psychiatric disorder. Good mental health can be encouraged, and I shall say something about this in a moment.

As I turn to the findings of the all-party group inquiry on children’s mental health, I thank yet again the National Children’s Bureau for its wonderful support, not only in organising the evidence sessions but in recording the findings, and for supporting children in general. The inquiry on mental health was a joint one, involving other all-party groups: those on child protection, penal affairs, and looked-after children and care leavers. We looked at three key challenges: relationships, service provision and transitions. We took evidence from young people, doctors, charities, schools and researchers.

One thing which became very clear at the beginning was that emotional exploitation online has a devastating effect on children. There is good evidence on this from ChildLine. Parents are often baffled by the online world and need advice and help. There is the need for better and more easily accessible support for young people, including online services such as cybermentors and online counselling. Is the law keeping up with technology? Will the Government encourage such services and the provision of extra information for parents?

The manager of a secure children’s home told the inquiry that there need to be expert child-centred holistic services to meet the complex needs of young people, including appropriate assessment of health, substance misuse and offending behaviour. Interventions need to include therapy and counselling, such as art therapy. Also important for young people is access to employment and accommodation.

I now want to look at what might be done to help prevent distress in children in the first place. A supportive family is all-important. Sadly some children do not have this and, even when they do, things can go wrong. Early spotting of learning problems such as dyslexia, and of behavioural problems such as bullying or self-harm, is essential. This may happen through a number of agencies, including parents, the voluntary sector, schools, children’s services, or the police. The old issue of services being co-ordinated and accessible is important, and we sometimes miss out on problems and the potential for early intervention. Others have asked this question, which I will repeat: how can we improve cross-agency working?

I will say a word about schools. The all-party group heard from pupils, teachers and researchers about how school can be distressing for some children. Focusing on performance and academic success can be unproductive if emotional needs are not met. It was said that student well-being is as important as academic achievement and must be integrated into every part of school life and learning. Children can develop self-esteem and resilience through a school’s approach. I have long supported, as has the noble Baroness, Lady Walmsley, the inclusion of statutory personal, social and health education in and outside the school curriculum. I am aware that the Government are considering the call of the Select Committee on PSHE to make it statutory in schools. I hope that the Government will take a positive approach to that.

An earlier inquiry by the All-Party Group for Children calls for action to implement the recommendation of the Children and Young People’s Health Outcomes Forum. It states that the Government should make it a legal obligation for public bodies to have due regard for children’s rights and that schools should ensure they develop a full programme for personal development, as well as academic skills, and link to support services. A cross-government youth strategy should be established, building on the report Positive for Youth. I hope that the Minister will be able to reassure the House that proactive measures, such as those I have mentioned briefly today, will be made concrete so that we can support children and families in preventing mental health problems and offering support and services if they arise.