Care Bill [HL]
Lord Patel Excerpts(11 years, 1 month ago)
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Baroness Greengross (CB)
I support the comments made by the noble Lord, Lord Warner, about this amendment. We know that the things people say they dread as their final days approach are loss of dignity and loss of respect, and we hear far too much about poor care at the end of life. Very often, it is poor care because people are not in the place they would like to be. We also know that the number of carers identified and signposted by the NHS to the enhanced support is not widely known. We know that much more needs to be done to draw together all the various approaches—I am involved in one of those approaches at the moment, looking with a group of experts at how to improve end-of-life care with doctors, professionals in end-of-life care and lawyers who deal with patients’ wishes. There is still a lot be looked at and brought together, and this Bill gives us a good chance of getting this right, or at least much nearer to being right than it is at the moment.
As the noble Lord, Lord Warner, mentioned, the coalition of charities has also suggested that end-of-life care should be free at the point of delivery. I know that this requires much more consideration—the noble Lord talked about that. I want to concentrate on hoping that this will be considered and that services to dying people and possible loss of dignity and respect will get a far higher profile as things that need urgent attention. Terminally ill people should have their preferred place of death recorded by local health and social care services. That preference needs to be implemented wherever it is practical. People must have their care and support needs and those of their carers treated as urgent by the local authority responsible for assessing those needs.
For people who are dying, every day is precious. They cannot wait while the bureaucratic wheels grind slowly along, and not always in their favour. I support the amendment tabled by the noble Lord, Lord Warner.
Lord Patel (CB)
My Lords, I spoke about this issue when we debated the gracious Speech, at Second Reading and in Committee, when I supported the amendment put forward by the noble Lord, Lord Warner, and today I support Amendment 137. Every time we have debated this, the Minister has been sympathetic to the idea of providing free social care to those who are dying. When I think about this amendment, I think of a patient who has just been told of a diagnosis of terminal cancer, that their life will now last a few months at the most, and that medicine cannot offer much more than perhaps palliative care or treatment of some kind. Once the patient and the family have recovered from the shock, their immediate thoughts are, “Can I cope with my life—which will now be very short—at home, and what support can I get?”.
Currently, the means test for free social care can represent a barrier for those who wish to die at home. It makes it unaffordable for some, but it also means that the person may be passed between the local authority and the NHS while the two systems decide who is eligible for care and whether it should be free or means-tested. Government Amendment 57 is a demonstration of the Minister’s clear intention. He wishes to see this happen, and I thank him for moving this amendment, but it does not go far enough to achieve what I think he, too, wishes to achieve.
The second subsection in the new clause proposed by Amendment 137 is addressed, at least in part, by government Amendment 57. However, Amendment 57 does not introduce any new duties for local authorities. It highlights the existing ability of local authorities to regard the care and support needs of people at the end of life as urgent. In contrast, Amendment 137 allows the Government to introduce secondary legislation to require local authorities to regard the assessment of needs at the end of life as urgent. If the intention of the government amendment is to do that, is it clear enough? The final part of Amendment 137 relates to free social care at the end of life. Research suggests that the introduction of free social care at the end of life has broad-based support. I believe this will help to prevent expensive, unnecessary hospital admissions, prevent burdensome financial assessment during a difficult time and is an important part of giving people genuine choice at the end of life.
Care Bill [HL]
Lord Patel Excerpts(11 years, 4 months ago)
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Lord Patel
“(1) When a child receiving services reaches the age of 14, or a local authority receives a request from the child, or a parent or carer of the child, to assess the child’s needs for care and support (whichever is sooner), the authority must, if the consent condition is met, assess—”
Lord Patel
My Lords, I shall speak also to my Amendments 92C and 92D, 94 to 100 and 101 to 104 concerning Clauses 55, 57 and 59. I also support Amendment 92BA, which is in a similar vein to my Amendment 94, and Amendment 104ZA in the names of the noble Baronesses, Lady Browning and Lady Tyler of Enfield, and the noble Lord, Lord Touhig, which is similar to my Amendment 92C. I also support government Amendment 93A. I thank all noble Lords who have added their names to my amendments, for which I am very appreciative.
My amendments deal mainly with the problems experienced by extremely vulnerable children as they transit from children to young adults, then adults and adulthood, by placing a duty on local authorities to assist this group of children. There are about 45,000—I repeat: 45,000—children or young people from newborns to the age of 19 who have long-term health conditions which will eventually end the lives of most of them and for which they may require palliative care. Medical advances mean that more young people with a range of different conditions are living into adulthood than ever before. The greatest increase is among those aged 16 to 19, who now account for 4,000, or one in 10, newborns to 19 year-olds needing palliative care.
The majority of young people who may require palliative care have a range of severe disabilities and complex health needs. Cancer represents just under 14% of diagnoses. Many young people have cognitive impairments, meaning that they lack capacity, and many are cared for over long periods by parent carers. Many young people with life-limiting or life-threatening conditions who are more cognitively able struggle to achieve independence or to enter education or employment because plans are not made for them. Those who are unlikely to be cured by treatment are offered palliative care. Transition for children after their 16th birthday is complex. Successful transition needs to address the transfer of responsibility for young people from children to existing adult social care, health and education services, and the development of new adult services tailored to young people’s additional needs.
It needs to be planned years in advance, but sadly the reality is that transition planning is too often disjointed and poor. As a result, many young people and their families find transition daunting. All this happens at a time when young people’s needs may be greatest, as many chronic, progressive conditions reach a crisis during late adolescence and young adulthood. Given the situation, these young people and their families cannot afford to wait and adult agencies need to ensure that their responses are timely and appropriate.
Together for Short Lives is a consortium of charities that looks after these children as a transition task force. It sought the opinions of young people who need palliative care. The view of young people is that the adult services they need are inadequate. They want services that enable them to lead ordinary lives, including a social life. They want a feeling of freedom, and not to be overwhelmed or bossed around by adults, while at the same time to be offered appropriate support. The young people’s frustrations with transition are shared by their parents.
I recognise that the Government have included Clauses 55 and 63 with the intention of ensuring better planning for young people who need to transition. I welcome the powers that local authorities will have to assess young people under the adult statute ahead of the young person’s 18th birthday. Despite the Government’s good intentions the clauses as they stand will not offer the certainty and reassurance that young people with very complex needs, and their families, desperately seek. On Second Reading, the Minister stated:
“The Bill will ensure that no child reaching the age of 18 should go without the care and support that they need around the point of transition”.—[Official Report, 21/5/13; col. 828.]
However, in only giving powers and not duties to local authorities to undertake a child’s needs assessment, the wide variation in the quality of transition planning will simply remain in those cases where children and their families do not request an assessment. Local authorities will face particular financial pressures.
My Amendment 92B would ensure that no young person misses out on a child’s needs assessment. It would replace the power for a local authority to undertake a child’s needs assessment request with a duty. Setting the age threshold for a child’s needs assessment at 14 is based on existing statutory requirements for every young person in year nine—that is age 14 to 15—with a statement of special educational needs to have a transition element. The amendment merely mirrors that.
Amendment 92C sets out the existing legislation underpinning the services that a young person who needs palliative care receives. The amendment would ensure that a local authority would be obliged to carry out a child’s needs assessment for a young person receiving the services specified over a long-term period up to the age of 14.
If 14 is the age at which transition planning should begin for a young person who needs palliative care by the age of 16, every young person who is likely to need adult health or social care when they reach 18 should have received a child’s needs assessment. That would ensure that the assessment happens in good time before the transition to adult services takes place. My Amendment 92D would mean that this is the case.
Amendment 94 would ensure, by putting a duty on local authorities, that if a child’s needs assessment finds that a young person is likely to need health or social care when they reach adulthood, a statutory five-year rolling transition plan should be prepared for the child or young person by the time they are 16. Amendment 94 has a number of other important features. It would mean that children, parents and carers are involved in the transition planning process. It would ensure that transition plans are maintained until the young person reaches the age of 25.
Like all young people, many of those who need palliative care want to strike out on their own and establish their independence. It should be remembered that these are children who are on longer-term palliative care. They hope to go into further or higher education, get a job, move into their own home and develop a social life. Amendment 94 would ensure that young people’s aspirations to move into their own homes would be included in the transition plan. Tragically, as a result of lack of planning, many are unable to do so. Too many of these young adults die while they are waiting on housing lists.
One of the provisions included in the Children and Families Bill is to introduce an integrated education, health and care plan—EHC plan—for young people who have special educational needs. This will include many, but crucially not all, young people who need palliative care. When a young person stays in education and training, they will be eligible for an EHC plan until the age of 25. I recognise that an EHC plan could fulfil the functions that I intend a transition plan in my amendment to do. Indeed, an optimal position would be where EHC plans are available to all young disabled people up to the age of 25. In lieu of that, this amendment is necessarily lengthy—I apologise for that—to ensure that a statutory plan is put in place to provide similarly joined-up transition provision for young people who need palliative care but do not have SEN.
Amendments 95, 96 and 97 aim to ensure that transition planning is maintained for young people who need palliative care and who move from one local authority area to another. They mirror Clauses 36 to 40 in the Bill, which place duties on local authorities to ensure continuity of social care when adults move from one area to another—so why not for these vulnerable children?
Amendment 97 would provide for the Secretary of State or an appointed person to step in to resolve any disputes about where that young person lives with regard to assessing the child’s needs and preparing a transition plan. The amendment would provide for the continuation of a young person’s transition plan where such a dispute arises. In considering young people who need transition from children to adult services, it is vital that we take into account the needs of those who care for them. Again, I recognise and support the Government's aspiration to do so in the Bill. However, as with the clauses relating to planning for young people’s needs on transition, I believe that we need to go further in order to ensure that planning for carers also happens in practice.
Amendment 98 would place a duty on local authorities to assess the likely care needs of those caring for a child who is likely to need services as an adult. Under the current wording in the Bill, local authorities would have the power to conduct a child’s carer assessment but would not be obliged to do so. That has the potential again to create unnecessary variations in transition planning for carers in local areas.
As I proposed in Amendments 92D and 98, 14 is the age at which transition planning should begin for a young person who needs palliative care and their carer. The young person’s and the carer’s needs should be assessed by the time the young person is 16. This would ensure that the assessments happened in good time before the transition to adult services took place. Amendment 100 would ensure that that is the case.
Amendments 101, 102, 103 and 104 are consequential to Amendment 100. Amendments 101 to 104 further strengthen the Bill by making sure that local authorities are duty bound to meet a child carer’s need for support.
I repeat that my amendments seek to put a duty on local authorities to assist 45,000 of the most vulnerable children whose lives will be short because of their conditions. The amendments will give them an opportunity to have a semblance of normal, enjoyable life with appropriate support and care. It is neither organisationally nor financially a great deal to ask.
I realise that my amendments are lengthy and I am sure that the Bill team could do a better job with much abbreviated amendments to meet the same needs. If the Minister feels that the amendments are too wide in scope, I will be pleased to be of assistance in narrowing them down to focus particularly on these vulnerable children. I beg to move.
Earl Howe
My Lords, I thank Members of the Committee, and especially the noble Lord, Lord Patel, for a debate which illustrates the significance of transition to young people and their families and the need to get the legal framework right for them.
As we have heard, these amendments cover a range of issues. In respect of Amendments 92D, 98 and 100, I have listened with interest to concerns about the absence of a requirement that transition assessment should take place at a particular age. We are in agreement that the timing of assessment is crucial, but this is essentially a question of approach.
The Care Bill proposes that two tests be used to ensure that assessment takes place at the right time for each young person or carer. We believe that this is preferable to rigid timescales which take no account of an individual’s needs or circumstances. First, a local authority may assess a young person, their carer or a young carer where it appears to the local authority that the child or carer is likely to have needs upon the child turning 18. This is to be used in conjunction with the second consideration, whether assessment would be of “significant benefit”. This recognises that a one-size-fits-all approach is not in the best interests of young people or their carers.
Amendments 92B and 92C would limit the group of young people who can benefit from transition planning to those who are already in receipt of services. We would not wish to impose any such restriction. Indeed, this restriction was removed following public consultation and pre-legislative scrutiny, because transition planning may equally benefit those who are not currently in receipt of services.
I have heard the concerns expressed that local authorities are not under a duty to assess in every case. This is indeed true, and for very good reason. Some young people will not have needs for care and support after the age of 18. It will not be appropriate, nor indeed will it be in a young person’s interests, to assess in every case.
I listened with interest to concerns about provision for carers of children. We need to be clear about this. Support should be available where it is needed. The question is the source and nature of that support. Clause 59 provides a power, rather than a duty, for local authorities to provide support because existing children’s legislation already includes provision for support to a child’s carer. Duplication of existing legislation may cause confusion and is unnecessary. This power is intended to enable support to be provided under adult legislation where a certain service is available only locally via that route.
I turn now to planning for transition and Amendments 92BA and 94. Provision for transition assessment is focused on the outcomes that the individual wants to achieve. I can reassure the noble Lord, Lord Patel, that such outcomes may include employment, education or housing. I also share the noble Lord’s expectation that, when a child has an education, health and care plan, any assessment under these clauses should take the EHC plan into account and the assessment should be integrated into that plan.
The Care Bill and the Children and Families Bill include provision that assessment can be joint, including joined-up assessments in relation to an EHC plan. These issues will be addressed by both the guidance supporting the Care Bill and the Department for Education’s SEN code of practice.
In respect of Amendment 94, I briefly add two further points. First, when a young person over the age of 18 has an EHC plan, and as such the care part of that plan is provided under this Bill, we would expect co-operation between adult and children’s services in relation to any review of the plan under Clause 6(5)(a) and (b). Such co-operation for those under 18 who are in transition is provided for by Clause 6(5)(c). This would include co-operation with the preparation, maintenance and review of the EHC plan as provided for by the Children and Families Bill, in respect of children. Guidance can ensure that this is clear.
Secondly, requiring a local authority to make arrangements to secure provision for children and young people with a transition plan would not be appropriate. Services to children cannot be provided under the Care Bill. Children’s legislation provides for this. Services to young people over the age of 18 would be provided, if necessary, under provisions earlier in Part 1.
In relation to Amendment 104ZA, I agree on the need to ensure continuity of care. However, we must avoid creating overlap or confusion with local authorities’ existing duties in relation to children, including rights to assessment and support under the Children Act 1989. For this reason, it would be preferable for the young person to request assessment as they see fit and for the local authority to initiate this conversation with the child. The request itself is not envisaged as a formal process. Indeed, for some young people the request will form part of a conversation the local authority initiates about transition to adulthood. Guidance can be used to make this point.
Young people and their families will need information in order that they can understand the adult care and support system and, crucially, that they are aware of their right to request assessment. Clause 4 requires local authorities to establish and maintain an accessible system for information and advice including information and advice about how to access the care and support that is available.
Through Amendments 95, 96 and 97, the noble Lord, Lord Patel, the noble Baroness, Lady Pitkeathley, and the noble Lord, Lord Patel of Bradford, have also expressed concern that there should be provision to support children with care needs to move between areas, without the fear of experiencing a gap in their care and support. I agree. Provision for people over the age of 18 already exists at Clauses 36 and 37 and provision for children with an Education Health and Care plan exists in the Children and Families Bill. If a young person under the age of 18 who has had an assessment under the provisions of Clauses 55 or 60 moves to a new area, the general duties of co-operation, in particular with other local authorities under Clause 6(6)(b), would also apply.
I should like to reassure the noble Baroness, Lady Pitkeathley, in relation to Amendments 93B, 100A and 104ZZA that consideration of “other matters”, a person’s own capabilities and the other support that may be available does not exclude the provision of more conventional care and support services where needed. Indeed, when the child becomes 18, if the individual’s needs are eligible, the local authority must meet them, in accordance with Clause 18, if the adult wants the authority to do so, and those requirements are not diminished by these three paragraphs. The intention is to recognise that, in order to make the right connections to the local community and the variety of support available, the local authority should consider how these matters, along with more formal care and support provision, could be of benefit in achieving the adult’s outcomes.
The noble Baroness suggested that carers might be pressurised by these provisions into providing care. It is certainly not our intention that pressure is put on carers. The clauses make it very clear that a carer must be willing and able to provide support and that the impact upon carers’ well-being must be considered.
She flagged up the concern that the new provisions in Clauses 56, 58 and 61 are departures from the draft Bill and asked why that was the case. The Bill as introduced includes greater clarification as to the nature of the assessment that should be carried out and what should be considered. It is largely for drafting reasons that we split the subsections relating to children, children’s carers and young carers into two subsections for each group.
The noble Lord, Lord Warner, pointed out that, in his view, the Bill is framed as though young people are strangers to the local authority. The Bill makes provision both for those who are receiving children’s services and are known to social services and for those who are not currently receiving care and support. Clause 6 provides a duty to co-operate, including within the local authority. In particular, in relation to children transitioning to adulthood, there is a duty for those internal discussions to take place. The request mechanism in the Bill is not intended to be a formal or bureaucratic process, as I mentioned earlier.
The noble Lord, Lord Hunt, asked me to confirm whether the Government are considering bringing forward amendments on carers, and expressed his concern that the timing of the Children and Families Bill relative to this Bill is unfortunate. I can tell him that my noble friend Lord Nash, at Second Reading of the Children and Families Bill in your Lordships’ House, said:
“As my honourable friend the Minister for Children has said, we are considering how the legislation for young carers might be changed so that rights and responsibilities are clearer to young carers and practitioners alike. We will also look at how we can ensure that children’s legislation works with adults’ legislation to support the linking of assessments, as set out in the Care Bill, to enable whole-family approaches”.—[Official Report, 2/7/13; col. 1201-02.]
The Minister for Children and Families and the Minister for Care and Support have met the National Young Carers Coalition to discuss the key principles for taking this work forward over the summer, as well as how we can most effectively involve the NYCC during this period.
Finally, the government amendment in this group will ensure that the provision added to Clauses 58 and 61, following consultation and pre-legislative scrutiny, specifying that a needs assessment must include an assessment of the impact of the adult’s needs for care and support on their well-being, is also added to Clause 56.
We have had much discussion recently about the need to ensure that services are organised around the needs of individuals. I hope that I have been able to explain how this legislative framework for transition is focused on meeting that aspiration. I hope, too, that I have provided some reassurance about the approach we are taking to smooth the transition to adult care and support. I hope that the noble Lord, Lord Patel, will feel able to withdraw his amendment.
Lord Patel
My Lords, I thank the Minister for his response, which was as detailed as my amendments. I am reassured by some of the things that he has said, and how the Bill addresses those issues. Although the Minister does not agree with me, there is an issue about specifying the age of 14 as the time of assessment for this small number of vulnerable children. There is a need to do so. However, at this point I do not wish to prolong it. I beg leave to withdraw the amendment, but I hope that we will have further discussion outside the Chamber.
Medical Litigation: Impact on Medical Innovation
Lord Patel Excerpts(11 years, 4 months ago)
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Earl Howe
My noble friend makes an extremely important point. Our policy is that it is right that NHS patients who are injured as a result of clinical negligence should be able to obtain correct and full compensation. Under the current system, compensation is in general paid only where legal liability can be established. The underlying principles are clear cut and enshrined in common law.
Lord Patel
My Lords, does the Minister agree that the only bar to surgeons introducing new surgical procedures is that they subject them to external audit to make sure that they do not harm patients?
Care Bill [HL]
Lord Patel Excerpts(11 years, 5 months ago)
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Baroness Cumberlege
My Lords, I strongly support the amendment tabled by the noble Baroness, Lady Emerton, and am very interested in what the noble Lord, Lord MacKenzie, said. It seems that, over the years, nursing has been the poor relation when it comes to promoting the medical profession. Both are so important, and they have to work together. If the Francis report tells us anything, it is that we need to ensure that both are of a very high quality.
I asked the Royal College of Nursing today to give me some examples of research that nurses are doing. I will not try the patience of the Committee by going through them, but it gave me three extremely good examples which undoubtedly improve the quality of patients’ experiences and recovery rates. This work is going on, but it really should be of a higher profile. It should be applauded and used. I appreciate very much what the noble Lord, Lord Hunt, said about lists, which are a trap that I remember falling into on occasions when I was a Minister. I suspect that the noble Earl will tell us that we want to have it both ways: sometimes we want things in regulations because that is more flexible and at other times we want them in the Bill. This is something of a dilemma, but if the medical profession is in the Bill, nursing certainly should be as well.
I also strongly support Amendment 60, in the name of the noble Lord, Lord Turnberg. I was very interested to read about the delays that occur through not getting together all the different organisations that are going to be involved in a single trial. According to Kidney Research UK, the time taken in one trail to receive R&D permission varied from around five weeks to 29 weeks. A study of stroke survivors took between one week and 35 weeks to receive permission from the NHS trusts involved. The time taken between submission of site-specific information and NHS approval ranged from five weeks to 50 weeks for a multi-centre trial comparing two types of emergency intervention for ruptured aortic aneurysm. This is totally unacceptable. Those who are promoting the research, and are the leaders in it, must get so frustrated when the bureaucracy will not allow them to go ahead. We need good research. It makes a huge improvement to patients’ lives, especially, of course, when it is translated to the patient in the bed, as it were. Anything that we can do to speed this up and to put pressure on to ensure that the time lags are not as long as this would be very much welcomed.
Lord Patel
My Lords, I rise to support Amendments 59, 60, 61 and 62, to which I have put my name. It was very clever of the noble Lord, Lord Hunt of Kings Heath, to have an amendment about the medical royal colleges lead to a discussion on value-based pricing and the cancer drugs fund. I am tempted to have that debate because it may be much more interesting; it is an issue that we should debate at some stage. In responding to the previous amendment, the noble Earl highlighted the Government’s strong backing for life sciences. When we talk about value-based pricing, we must consider how we could reimburse cell-based therapy, which is not drug therapy, at what stage in the development of cell-based therapy reimbursement should kick in and what value would be put on different stages. That would be a good debate to have.
Moving on from that, I strongly support the amendment tabled by the noble Baroness, Lady Emerton, on the inclusion of the Chief Nursing Officer. I also support her in asking why Health Education England does not have a nurse education director. If the nursing workforce is the largest health workforce in the NHS and does not have a nurse education directive, something is missing and needs to be replaced.
Lord Patel
“Human Tissue and Embryo Authority
(1) There shall be a body corporate called the Human Tissue and Embryo Authority.
(2) The Authority shall consist of—
(a) a chairman and deputy chairman, and(b) such number of other members as the Secretary of State appoints.(3) The Authority shall keep proper accounts and proper records in relation to the accounts and shall prepare for each accounting year a statement of accounts.
(4) The annual statement of accounts shall comply with any direction given by the Secretary of State, with the approval of the Treasury, as to the information to be contained in the statement, the way in which the information is to be presented or the methods and principles according to which the statement is to be prepared.
(5) Not later than five months after the end of an accounting year, the Authority shall send a copy of the statement of accounts for that year to the Secretary of State and to the Comptroller and Auditor General.
(6) The Comptroller and Auditor General shall examine, certify and report on every statement of accounts received by him under subsection (5) and shall lay a copy of the statement and of his report before each House of Parliament.
(7) The Secretary of State and the Comptroller and Auditor General may inspect any records relating to the accounts.
(8) In this section “accounting year” means the period beginning with the day when the Authority is established and ending with the following 31st March, or any later period of twelve months ending with the 31st March; and Schedule 1 to this Act (which deals with the membership of the Authority, etc) shall have effect.
(9) The Authority shall prepare—
(a) a report for the period beginning with the 1st August preceding the day when the Authority is established (or if that date is a 1st August, beginning with that date) and ending with the next 31st March, and(b) a report for each succeeding period of 12 months ending with 31st March.(10) The Authority shall send each report to the Secretary of State as soon as practicable after the end of the period for which it is prepared.
(11) A report prepared under subsection (9) for any period shall deal with the activities of the Authority in the period and the activities the Authority proposes to undertake in the succeeding period of twelve months.
(12) The Secretary of State shall lay before each House of Parliament a copy of every report received by him under subsection (10).
(13) The following provisions of the Human Fertilisation and Embryology Act 1990 are repealed—
(a) sections 5 to 10, and(b) section 11(1)(a) and (aa).(14) Save for the provision in subsection (13), references in the Human Fertilisation and Embryology Act 1990 to “the Authority” shall be taken to be references to the Human Tissue and Embryo Authority.
(15) The Care Quality Commission may grant the following licences—
(a) licences under paragraph 1 of Schedule 2 to the Human Fertilisation and Embryology Act 1990 authorising activities in the course of providing treatment services,(b) licences under paragraph 1A of that Schedule authorising activities in the course of providing non-medical fertility services.(16) Sections 12, 13 and 13A of, and paragraph 4 of Schedule 2 to, the Human Fertilisation and Embryology Act 1990 have effect in the case of all licences granted under subsection (15) as they would do for licences granted under that Act.
(17) Section 13 of the Human Tissue Act 2004 is repealed.
(18) Save for the provision in subsection (17), references in the Human Tissue Act 2004 to “the Authority” shall be taken to be references to the Human Tissue and Embryo Authority.
(19) In Schedule 5 (power to modify or transfer functions) to the Public Bodies Act 2011 omit—
(a) the entry for the Human Fertilisation and Embryology Authority, and(b) the entry for the Human Tissue Authority.”
Lord Patel
My Lords, I rise to speak to this amendment in the name of the noble Lord, Lord Willis of Knaresborough, with some trepidation. It is not because I do not strongly support his amendment, but because I hope that I can do justice to it with the kind of passion that he would have demonstrated when presenting the argument if he had been here. However, I have no doubt that while resting in his bed, he has probably turned on BBC Parliament and is watching to see that I do the task adequately.
I think the reason why the noble Lord, Lord Willis, has demonstrated such passion is because he recognises that there is a need to reduce bureaucracy. Too many regulatory bodies mean more bureaucracy. To give an example, we have the second-highest number of competent authorities in the EU. Joint highest are Poland, Romania and Italy. However, on top of that, we have more regulatory authorities—over a dozen—than any other EU country. I see noble Lords look rather surprised, but I believe that to be true.
One issue is reducing unnecessary regulatory bodies. Another issue is reducing bureaucracy. The third issue is reducing duplication. The Human Fertilisation and Embryology Authority’s key role is to improve clinical services related to patients with fertility problems. The key reason that the authority was set up, following the birth of Louise Brown, was to reduce public anxiety about in vitro fertilisation. No such public anxiety now exists related to in vitro fertilisation.
Further functions were added to that authority in terms of embryo research. There may still be a need for that, but a reducing one. To give an example, we have enough clinical grade embryonic stem cell lines to last us a century and supply the world. I think the derivation of more embryonic stem cell lines is probably unlikely, unless there is some kind of major breakthrough. Research on embryos and embryonic stem cell lines is also now slightly superseded by induced pluripotent cells, dendritic cells and adult cells. However, I agree that there might still be a need for some embryo research and that function needs to remain.
The duplication is likely because the CQC will have a licensing role for those trusts that provide clinical services in infertility. Of course, I accept that the majority of infertility services relating to in vitro fertilisation—and I have no doubt that the noble Lord, Lord Winston, who is listening to me carefully, will correct me wherever I go wrong—are in the independent sector. Unless that service is provided for an NHS patient, the CQC does not have a role, and there must be a way of overcoming that. If we do not overcome that, the services provided within the NHS will run the risk of duplication of effort by the Human Fertilisation and Embryology Authority and the CQC.
There is also a fourth argument, and that is the reduction of cost. The noble Lord, Lord Willis, wrote a letter to the Times asking why all these regulatory authorities have a whole army of communication officers. What do they communicate? Why do they need so many? The noble Lord referred to the cost, and there are also other back office costs that are increased unless we reduce the number of regulatory authorities. His proposal is that there should be a reduction and that a body called the Human Tissue and Embryo Authority should be established rather than the HTA and the HFEA. The noble Lord lists where the changes would be required in their functions and in subsection (15) sets out the role of the Care Quality Commission to streamline all these efforts and reduce costs.
It is interesting that initially, in an attempt to reduce the number of quangos, the Government in the Health and Social Care Act decided that the HFEA and the HTA, with other quangos, would be abolished. Now, with the high profile of patient safety, we wonder whether some of the others should have been abolished. If I remember correctly, we debated the HFEA and the HTA during the passage of the Health and Social Care Bill and, in fact, we had a Division on it.
However, the Government decided to go to consultation, and I understand that Justin McCracken has been commissioned to review the operating functions of the HFEA and the HTA to see how they might deliver greater efficiencies. I think that this amendment, in the name of the noble Lord, Lord Willis of Knaresborough, would deliver those efficiencies, and I should be interested to know whether the Minister agrees that this would be a better way forward in dealing with the Human Tissue Authority and the Human Fertilisation and Embryology Authority. I beg to move.
Lord Warner
My Lords, I rise because I gave an assurance to the noble Lord, Lord Willis, that I would speak on this amendment as I have form, as they say, in this area.
Ten or so years ago, when one person accused me of being rather like Vlad the Impaler and we were slaughtering, as well as merging, a number of quangos, two of the candidates for merger were the Human Tissue Authority and the HFEA. Much of the argument for doing that was very similar to the argument that the noble Lord, Lord Patel, has advanced, although I did not know as much then as I know now about the number of bodies that we had compared with other countries regulating in this area. However, I assure the Committee that we had a lot more in 2003-04. Therefore, there is a case for this merger, and it has been made.
By backing away from this merger in the face of the arguments that were put forward, I ceased to be Vlad the Impaler and became Warner the Wimp. To their credit, this Government decided to have another go, but they seemed to get themselves in roughly the same position as Warner the Wimp and withdrew. Really, they withdrew because at the end of the day the savings were—certainly so far as I was concerned—not significant compared with some of the other savings that could be made. However, we have grown to appreciate more the importance of health research and the role of the life sciences in our economy, and I think that there is still a case for going the extra mile, when you can, to streamline the regulatory system in this area.
I hope that the Government will look sympathetically on this amendment, even if they do not want to accept it in its present form. I hope that some of us speaking out on this in the review will give the Government some courage to be a bit braver than they were, and than I was, in the past. Therefore, I support the spirit and the ideas behind this amendment.
Lord Walton of Detchant
My Lords, it pains me to oppose this amendment because the noble Lords, Lord Willis, Lord Patel and Lord Winston, are people for whom I have the highest possible regard. Each in their own way has made outstanding contributions to issues relating to medicine and science in your Lordships’ House. Almost invariably, we have found ourselves singing the same tune, if perhaps sometimes in slightly different keys. Having said that, however, I am opposed to the amendment because I thought that this battle had been won two years ago. Admittedly, when this Government came into office, they embarked on what they called the “bonfire of the quangos”. A huge number of quangos were abolished, but after careful consideration and an attempt to merge these two bodies, the decision was made that they should continue to function independently.
Let me give my reasons for taking this view. When I came to this House in 1989, my baptism of fire was the Human Fertilisation and Embryology Bill that later became an Act. It was based upon the Warnock report. The function of the Bill was to create a Human Fertilisation and Embryology Authority that would license bodies and scientists working on research into the human embryo up to 14 days after fertilisation with, first, the objective of improving the treatment of infertility and, secondly, of helping in the prevention of inherited diseases. The noble Lord, Lord Winston, and others were among those who were eventually extraordinarily successful in carrying out the procedure known as pre-implantation diagnosis in order to detect embryos which were likely to cause serious human diseases. That was a very important development.
Subsequently, several other amendments were introduced—and I was deeply involved in those debates in your Lordships’ House—so that the licence could allow people to embark on research with these objectives and to address the important and crucial issue of carrying out research into the treatment of human disease. That in turn led to the development of the mechanism for creating stem cells for the treatment of human disease. There has been a series of progressive amendments that have been fully debated in your Lordships’ House. Now we are faced with the very exciting prospect, following an extensive period of consultation, whereby embryos can be created by pronuclear transfer derived from women who are likely to pass on devastating mitochondrial genetic mutations to all of their children of both sexes. The consultation is now complete and we can look with hope towards the prospect of the regulations to allow those embryos to be implanted being introduced into your Lordships’ House. This is a crucial development. I agree entirely with certain things that the noble Lord, Lord Winston, has said—the Human Fertilisation and Embryology Authority has not functioned as effectively as it might. However, his criticisms were largely concerned not with the potential merger but with the actual performance of the body as an authority.
I was also heavily involved in the debates in your Lordships’ House on the formation of the Human Tissue Authority. This body arose as a result of the so-called Alder Hey scandal where a huge number of human brains and other organs were kept in the hospital without the permission of the families. Of course, it was not recognised in many debates at the time that certain members of the medical profession held a widespread, ill-founded belief that once permission was given by a family for a post mortem examination it was proper to retain organs. That belief was partly based on the fact that to establish a diagnosis after a post mortem examination it is essential that certain organs are fixed in formalin before they can be studied and before the diagnosis can be confirmed. This is crucial. As a result of the so-called Alder Hey scandal the Human Tissue Authority was established. It has the authority to license anatomy departments to handle human organs and pathology departments to study human samples, both full organs and biopsy specimens. It has the authority to license organs being used for transplantation purposes and many similar functions. These departments in universities and hospitals are licensed by the HTA.
The function of these two bodies is entirely different and I do not believe that it is sensible—even in the attempt to create another quango which brings together two quangos—to merge them. The new body would undoubtedly have to create two sub-committees, one to look at human fertilisation and embryology and another to look at the issues of human tissue and the retention of it. I therefore do not support this amendment.
Lord Patel
I disagree with my noble, respected and even revered friend Lord Walton of Detchant. He fundamentally fails to understand this amendment. It does not remove the research functions of the Human Fertilisation and Embryology Authority. I have spoken strongly in the past about embryo research, including cell nuclear transfer and mitochondrial research. It is the authority that has held up for so long the progress in mitochondrial research. We should have been doing something about it at least 18 months ago. This amendment does not remove that function, nor does it remove the functions of the Human Tissue Authority, but by amalgamating these functions we can better promote research. The authority and functions of the Human Fertilisation and Embryology Authority—and now we are entering into a science debate, which is not the purpose of the Bill—stop once it gives a licence to do specific research on an embryo. Once the embryonic stem cells are created it has no authority over how those cells are used. Once the cells are used to create a tissue for research it does not have any authority, but the Human Tissue Authority may do. By amalgamating the two you are co-ordinating this research function and maybe improving it. I hope that my noble and revered friend accepts that explanation.
The Lord Bishop of Chester
My Lords, having listened to these distinguished doctors taking different points of view on this subject, I fear that I might lower the tone of the debate. However, I think that my money is with the noble Lord, Lord Walton of Detchant. There is a world of difference morally between research carried out on tissue taken from a dead body and research taking place on living tissue which has the potential to be a human being in one way or another. People will argue about when life begins and those arguments can be very sensitive and very divisive. That is why there is separate legislation on research and on therapeutic techniques involving eggs fertilised outside the womb. Whether one likes it or not, if you put together the Human Tissue Authority and the HFEA you will create an impression that you are just dealing with dead matter or whatever, just a lump of cells. That is the impression that will certainly be given psychologically, even if in practice one could construct the unified authority in a way that had the two legs.
It may well be that one needs to revisit this area. The noble Lord, Lord Winston, speaks with such authority that I am very reluctant to take a different view. However, he seemed almost to be arguing for greater regulation rather than no regulation. I would be very reluctant to see a free market in implanting more than two embryos into women in this country, for example. The 14-day rule, which may be an irritant to researchers, was fought over and discussed at great length. To those of us who have quite a few reservations in this area, that is at least a line in the sand. I think that this area needs to be considered on its own merits and, notwithstanding the arguments quite rightly put by the noble Lord, Lord Patel, I am with the noble Lord, Lord Walton.
Lord Patel
Stem cells are not dead cells: they are immortal cell lines, such as the HeLa cells on which scientists have been doing research for decades. These cells were taken in 1951 from a woman called Henrietta Lacks—that is why they are called HeLa cells—and they are still alive. Most cancer research is done, and many drugs produced, using HeLa cells. They are immortal, living cells.
The Lord Bishop of Chester
My Lords, as St Paul once said, I speak as a fool. However, is there not a difference between stem cells that are alive in that sense and a fertilised egg that is alive in a different sense?
Lord Patel
I thank the Minister for his comments. Of course, I feel satisfied that the matter has been fully explored. No doubt the noble Lord, Lord Willis of Knaresborough, will take note of all the comments made. I thank all the other noble Lords who took part in the debate. I say to the noble Baroness, Lady Thornton, that I look forward to the day when her party brings forward an amendment again to burn the quangos, including the HTA and the HFEA. I look forward to the Minister then being on my side and arguing the point. Until then, I beg leave to withdraw the amendment.
Medicine: Experimental Drugs
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Earl Howe
My Lords, this will very much depend on a case-by-case analysis of the drug in question. If there is a very promising new drug that is a breakthrough medicine, where there is no alternative treatment, there may be a case for considering that more favourably than a drug for which there is a readily suitable alternative. As I mentioned earlier, the menu of options available to us, such as an early access scheme for unlicensed medicines and an adaptive licensing scheme within European Union rules for licensed medicines, can perhaps be tailor-made to suit the drug in question.
Lord Patel
Does the Minister agree that there are two separate issues: one is doctors’ and nurses’ ability to prescribe off-label drugs, which is allowed, and for which the doctor takes responsibility; and the second is using a drug that might be promising for treatment and doing research on it, which requires research protocol to be followed? Neither is permissible under current regulations.
Earl Howe
My Lords, the noble Lord is right that the two issues are distinct. It has always been the case that a doctor can, under his or her own professional responsibility, in certain circumstances, prescribe an unlicensed medicine. However, he is also correct that clinical trials need to take place within a framework of proper ethical and organisational approval.
Care Bill [HL]
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Lord Turnberg
My Lords, I, too, welcome the principle behind the noble Baroness’s Amendment 16 but I agree with the noble Baroness, Lady Cumberlege, that Health Education England may not be the right place for this. At various times in our debates I have banged on about the regulation of healthcare assistants, because not only would it reassure employers and patients that standards were being met but being on a register gives individuals a degree of self-respect and sense of identity and it boosts their morale. In a way, it is a pity that we got rid of state enrolled nurses some time ago when we moved to university-educated nurses. In effect, that has been very successful and nurses have done very well—they do a marvellous job—but we have left a gap where the SENs were.
Amendment 23, which moves slightly along this same route, may be as far as we can go but, if we do have mandatory training, that will inevitably mean that someone has to produce a register of those who have received such training. This may not be quite the right place for it but we might get there by another route.
Lord Patel
My Lords, I rise briefly to support my noble friend Lady Greengross. It is not that her sentiments about registration are not right but we debated this at great length during the passage of the Health and Social Care Bill and to a degree I felt that we lost the battle about registration then. What is now important is Amendment 23A, which, with all due respect, is a better amendment because it focuses much more on training and the responsibility of the employer. I agree with the noble Baroness, Lady Cumberlege, that HEE is not the right organisation to be a regulator of registration.
Baroness Browning
My Lords, I refer to the register and my charitable interests. I am also the named carer for an adult with a direct payments care package.
I support the amendment of the noble Baroness, Lady Greengross, although I must tell her that I have listened very carefully and I share some of the concerns about which is the right body. However, the argument for the principle of her amendment is well made.
The Bill gives Health Education England responsibilities for ensuring that the health workforce has the necessary skills to meet the needs of patients. That is valuable but there is a key omission concerning the registration of healthcare assistants and care assistants. Although those doing this work provide the vast majority of personal care to people receiving health and social care services and are fundamental to promoting and protecting service users’ dignity and respect, there have been—as we have debated on many occasions in this Chamber—far too many concerning reports in the recent past. These reports have indicated that something needs to be done at all levels and in all structures in healthcare, whether in hospitals, care homes or people’s own homes.
The Francis report clearly showed the failings at Mid Staffordshire Hospital and, while it identified the trust management as responsible for the shocking quality of care, it outlined incidences of poor care and inaction by healthcare assistants in reporting concerns. At Winterbourne View, people with severe learning disabilities were treated with an appalling lack of dignity by care assistants and nursing staff, some of whom have since been given prison sentences. A number of reports looking at dementia care in hospitals have found unacceptable variations in practice and high levels of dissatisfaction, alongside incidences of unacceptable care. A number of reports looking at home care provided to older people, including the Alzheimer’s Society reports Support. Stay. Save. and Home Truths, as well as an inquiry by the Equality and Human Rights Commission, indicate that care assistants lack the time to provide good-quality care to service users. There continue to be isolated incidences of reported poor care and abuse of older people in care homes. I shall not continue the list. Sadly, it goes on, and we see new reports in newspapers even today. It is so frustrating that we raise these issues and try to do things about them but they still continue.
Lord Turnberg
This group of amendments, to which I have attached my name, is all about putting into practice the brave words we have heard about the need to place research at the centre of what the NHS does.
We have had the important and impressive inclusion in the NHS mandate to NHS England and CCGs of the duty to promote research, and we have had the recent publication of the Association of Medical Research Charities of a vision for research in the NHS with its three proposals. First, every patient should be offered the opportunity to be involved in research. Secondly, all NHS staff should be made aware of the importance of research. Thirdly, the NHS should conduct high-quality research and adopt innovation in healthcare rapidly. All the good intentions were spelt out in the earlier Bill and subsequently, but we seem to have lost sight of that in the current Bill.
Amendment 17 simply makes clearer what seems to be rather vague and perhaps less forceful in the current wording about accepting research evidence and putting innovations into practice. The Bill states that HEE must promote, which is a good word,
“the use in those activities of evidence obtained from the research”.
That has to be read several times to be understood. My amendment suggests something rather clearer, and what I hope is intended, which is,
“the use of research evidence to ensure the rapid uptake of innovations into practice”.
Amendments 20 and 32 aim to ensure that Health Education England also makes it clear that all who work in the NHS should understand and be able to play a part in research and innovation by including a new responsibility, to ensure that research and innovation are incorporated into the Bill. Amendments 37 and 39 point to similar responsibilities for the LETBs. My name is attached to these amendments, which are in the name of the noble Lord, Lord Willis, who unfortunately cannot be with us today because he is unwell. We wish him well. There is considerable danger that the LETBs in particular, dominated by local provider interests, will not unnaturally focus on their need to provide a clinical service and their requirement for sufficient numbers to fill their workforce needs. In so doing, they may not see that a service that is constantly evolving and changing needs a workforce that is fully switched on to the research agenda. They may not see that the future leaders of change—those who can undertake research and introduce new and better treatments year in, year out need to have their training needs met, too.
There are at least two types of need. The first is that of future academic clinicians, professors, senior lecturers, lecturers and the like in medicine, surgery, obstetrics and so on. The second is the need of all practising clinicians, be they doctors, nurses or technicians, if they are to integrate innovations and change into their practices. The academics need training programmes that are sufficiently flexible so that they can do their clinical training for some of the time and their research at others. They will almost certainly need to take three or more years out to do their PhDs, and they often need to do their purely clinical training over a longer period than others, as they slot periods of research into their clinical training.
Those going on to straight clinical practice—always the majority—need to understand what research entails, and will need to have some contact with research. Some may even take full time out for research, and in that way can appreciate new research findings as they come along. All those factors need to be considered by those in charge of education and training locally. I fear that unless something to that effect, as proposed in the amendments, is incorporated into the Bill, it will be so easy for it to slip out of view under the considerable pressure simply to provide services for today, with no thought for the needs of tomorrow.
I am not encouraged by the Department of Health’s document which is the mandate from the Government to Health Education England, in which the section headed “Flexible Workforce, receptive to research and innovation”—a brave heading—spells out what is intended. There is little here about how the intention of encouraging the development of a research-receptive workforce will be carried out. There is much about generalism, flexibility across service divisions and so on—all highly desirable—but nothing about producing those capable of doing the research and engaging in the clinical trials needed to make innovation possible. I hope these amendments will help to fill those gaps.
Lord Patel
My Lords, I support these amendments. My name is attached to Amendments 17, 20 and 32 in the name of the noble Lord, Lord Turnberg, and to Amendments 37 and 39 in the name of the noble Lord, Lord Willis of Knaresborough, who, as we have heard, was taken to hospital yesterday. I spoke to him in his hospital bed just before we started and he was beginning to feel better. I am sure we will want to wish him well.
I strongly support the amendment because, through the Health and Social Care Act, we gave prominence to the need to promote research and innovation in the health service, and it is right that we did that. It would be a pity now if the only gap in that duty would be for it not to apply to the key body, Health Education England, and the local education and training board committees. As the noble Lord, Lord Turnberg, so eloquently put it, the amendments are about education and training by research, and about making sure that LETBs also have a responsibility to make sure that they conform to the functions of the HEE. They are all related to research, training, innovation, continuing training and research and supporting research. They cannot be wrong and I hope the Minister will accept them. They are well meaning and promote research further.
Baroness Jolly
My Lords, I thank the noble Lords, Lord Turnberg and Lord Patel, for helping me with these amendments. The noble Lord, Lord Willis of Knaresborough, is unwell and may not be returning to us in time to help with the Bill. His twin passions are training and research, and Amendments 37 and 39 to Clause 90, which are all about the functions of LETBs, completely underpin that. I would be doing him a disservice if I did not ask the Minister to explore these areas when he sums up.
It is critical not only at a national level, with HEE, but at a local level, with the LETBs, that this area is not forgotten. Staff must understand not only the implications but all aspects of research. That must be plugged in at HEE and, with these amendments to Clause 90, at the LETB level.
Care Bill [HL]
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Baroness Cumberlege
My Lords, I wish to say a word about these issues. There is a danger, when we are setting up on the face of the Bill, the component parts of something like the LETB boards. As I understand it, the principle was that the majority of members of the board are local providers. That seems sensible because clearly they are the people who are going to have the knowledge and will inform the LETBs. Simply adding new members, each with a representative function, does not really aid the ability of a board to make decisions. It can become less effective and efficient, purely due to the numbers of people around the table.
There are many groups of workers and, indeed, patients who have got a case, but there are other ways of involving them. I very much accept what the noble Lord, Lord Turnberg, said about having due regard to universities and deans of medical schools. I am happy about the idea that one should have regard to advice that has been given, but I am not sure about having specific representatives that HEE decides are good for a local area on the board. Some areas want to do it differently. To me, that is fine. The size of the LETBs varies enormously; they can be the size of the whole of the north-west and the whole of the south-west, yet Wessex and Thames Valley are separate. These are to be local education and training boards; they need the freedom and flexibility to reflect the local area. Although I understand that people are anxious to ensure that the LETBs are efficient and represent local areas, views and constituent parts, it should be left to their flexibility and judgment.
Lord Patel
My Lords, I support Amendments 38 and 41 in the name of the noble Lord, Lord Turnberg. I slightly disagree, which is difficult to do, with the noble Baroness, Lady Cumberlege. In the new world, postgraduate deans are responsible not just for medical education, but for the whole of health education. If Health Education England is to be a body that influences education and training from the beginning to the end—we will come to another amendment relating to continuous professional development—postgraduate deans and deans of medical and nursing schools are crucial. If they are not to be represented on the local education and training boards, Health Education England cannot, through its committee, influence any of the innovations in education and training. That would be wrong.
There are examples where postgraduate deans and deans of medical and nursing schools are represented on education and training boards and they work fantastically well. I cannot see any reason why postgraduate deans and deans of nursing and medical schools could not be represented on local education and training boards, no matter what their size. I support the amendment.
The Parliamentary Under-Secretary of State, Department of Health (Earl Howe)
My Lords, this is a really useful short debate. I begin by saying that members of the Committee should not feel anxious; I feel that there is a degree of anxiety which needs to be allayed.
Local health providers and their clinical leaders have told us that they are well placed to understand the changing shape of services and the way in which their workforce must respond to deliver high-quality services to patients. They are able to link workforce planning to service and financial planning, something that has not always been done well in the past and which has contributed to failings in workforce planning.
Following consultation, we have chosen to give local education and training boards a statutory basis as committees of Health Education England. But the policy intent, reflected in the Bill, is that they are not mere local delivery arms of a national body. Rather, they are a key part of decentralising power, so for the first time, the providers of health services will have clear responsibility and accountability for the planning, commissioning and quality management of education and training for their workforce.
The mandate to the Health Education England special health authority includes a clear objective to support more autonomous local decision-making on behalf of local communities. A critical measure of the success of Health Education England at national level will be the effectiveness with which its engagement with the LETBs and employers results in greater responsibility and accountability for workforce development being taken by employers at local level.
At the same time, with localism comes accountability. HEE will need to hold LETBs to account for their investment in education and training and delivery against key priorities. Of course, there needs to be co-ordination in the approach to planning and delivering education and training. That is why the Government, and the vast majority of stakeholders, believe that we have got the balance right in establishing Health Education England as a national leadership organisation for education and training, with local providers securing greater autonomy and accountability through the LETBs. There will always be national level priorities and objectives for workforce development and, rightly, Ministers want reassurance through Health Education England that they are being addressed, but the policy intent is to do that in a way that strikes a balance between the national and the more local perspectives.
Amendment 22 is intended to ensure that duties under Clause 86 extend to the LETBs. I appreciated the balanced comments of the noble Lord, Lord Hunt of Kings Heath, and wholeheartedly agree that local education and training boards, given a statutory basis as committees of Health Education England, should support Health Education England in the delivery of key national duties, including those in Clause 86. As commissioners of education and training, Health Education England and the LETBs will work with education partners, service providers and professional regulators to ensure that the education and training that is provided in education institutions and in health service settings continually improves and delivers health professionals who are fit for purpose and who meet the needs of employers, patients and service users.
We have already discussed the importance of research and the role that local education and training boards can play in supporting the diffusion of research and innovation. By promoting the NHS constitution through its workforce planning and education and training activities, HEE and the LETBs will help to ensure that staff develop the correct values and behaviours to practise in the NHS and the public health system.
Amendment 47 would amend Clause 92 to place an obligation on Health Education England to provide guidance on how it will ensure that providers of health services co-operate with local education and training boards. Clause 92 builds on an existing duty introduced by the Health and Social Care Act 2012, which places a legal obligation on commissioners to make arrangements with providers to secure their co-operation with the Secretary of State on education and training. The purpose of that duty is to ensure co-operation with the local education and training board to support workforce planning activities, the provision of workforce information and the delivery of education and training to healthcare workers. That is an important step in ensuring that the system is well integrated and that all providers play their part in supporting essential education and training activity.
To emphasise that, and in answer to a question put to me by the noble Lord, Lord Hunt, Clause 92 provides that regulations,
“must require specified commissioners ... to include in the arrangements under the National Health Service Act 2006 ... terms to ensure that”,
providers co-operate with the LETB.
The Government have already put in place measures to deliver the duty in the Health and Social Care Act 2012, which came into effect on 1 April 2013, by amending the commissioning contracts and supporting regulations for the delivery of services, so that they now require co-operation on education and training.
It will be the regulations rather than any guidance which will set out how the duty is to be implemented. The level of co-operation, the information requested and the obligations required may vary over time. It is therefore more appropriate to enable this level of administrative and procedural detail to be set by regulations rather than in the Bill.
Turning next to Amendments 38, 41 and 50, as we have previously discussed, it is important that Health Education England and the LETBs have access to people with expertise and knowledge on education and training matters. The postgraduate deans have great knowledge and expertise and, through the local education and training boards, they are now an integral part of the new system, working alongside other colleagues to strengthen the multidisciplinary approach to planning and developing the workforce. It is important to remember here that Health Education England and the LETBs have responsibility for the education and training of all the professions. Although medical training is a very important element of their functions, the LETBs have a much broader focus.
Lord Patel
My Lords, I have added my name to both these amendments in the names of the noble Baroness, Lady Emerton, and the noble Lord, Lord Willis of Knaresborough, and I strongly support the principles behind both. The key issue here is that a training curriculum should be developed by the Nursing and Midwifery Council, as the amendment says. In a way—to pre-empt the Minister regarding what the Cavendish review might recommend—whatever the review recommends will have to be taken on board by whoever develops the curriculum. Although the Cavendish review is not defunct, the principles of this amendment are not based on what it might say. Presumably the review will focus on the necessity for training and the kind of training that support and healthcare workers should have. These amendments put a duty on Health Education England to make sure that a curriculum is developed.
The other important point is that the training should be mandatory—not the training curriculum but the training—and the employers must ensure that they employ only those who, having been trained, hold a certificate showing that they have completed it. It is just the same as I would have to do when seeking employment at a hospital. I would have to produce a degree certificate from a university proving that I have been trained as a doctor before they will employ me. It would be an offence to do otherwise. The amendment does not provide for a penalty but that issue will have to be addressed. Although “register” might be the wrong word, the implication is that the employer should be obliged to keep a list of all the healthcare support workers in its employment who have completed the mandatory training and hold a certificate.
The completion of training and the holding of a certificate are the key issues. As nobody can be employed unless they have done that, the care for patients will be safer. The process will define the competencies of these people. It will define what further development they have to go through professionally to be able to do other tasks. It will also make the life of the supervisor easier as they will know what competencies these people have and they will not delegate to them tasks which are beyond their competencies. In that respect, these amendments fulfil all the requirements that the Francis report and several other reports have alluded to—the need to make sure that we have a fully trained and competent workforce which delivers front-line healthcare. I hope that the noble Earl takes the amendments in that spirit.
Baroness Jolly
My Lords, I want to add quickly to what has been said by the noble Lord, Lord Patel, and the noble Baroness, Lady Emerton. I very much support what they said. What I can add over and above that is that the amendment in the name of my noble friend Lord Willis, Amendment 23A, refers to,
“working directly with patients or clients”,
so it works not only in a health context but in a care context.
I will declare my mother—as the noble Lord, Lord Campbell-Savours, did his—as an interest. She is a lady who I visit regularly and is well over 90. Somebody comes to see her in her home every day—for the most part they are very nice young women—but I have no idea where they come from or what training they have. Amendment 23A would give me confidence that they have been trained and are certificated. Furthermore, these people tend to be quite a mobile population. If their certificates were to follow them from one establishment to the next, it would give the next establishment confidence that their training had been delivered to the right standard and that, all other things being equal, it is appropriate to employ them. That adds weight to Amendment 23A.
Care Bill [HL]
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Lord Patel
“(e) support the continuing professional development of medical professionals in its area.”
Lord Patel
My Lords, one often feels during any legislation that by the time it finishes the Minister—in this case, the noble Earl—must wish that he had included in the Bill something that he had forgotten. This amendment is it and I hope that he will see it in that light, particularly as continuing professional development was a part of the original draft Care and Support Bill. However, it was taken out of this Bill and I wonder why. I am sure that the Minister knows why and will tell us. I feel that somehow the page got turned and it was left out, rather than being deliberately not included. None the less, I will make a case that it should be included because it is one part of education that should be part of HEE and LETBs.
The amendment requires the local education and training boards to set out in their education and training plans how they will support continuing professional development. The NHS constitution commits all employers supplying NHS-funded services to provide staff with personal development and access to appropriate training for their jobs. Continuing professional development is important for healthcare professionals to maintain and improve their professional skills. While you might go to medical school for five years and undertake postgraduate study to be a specialist or a GP for six or seven years or even longer, continuing professional development is for the rest of your professional life. For many specialties, without continuing professional development you cannot provide up-to-date care.
Continuing professional development is particularly important for those working in medicine but it is also important for all other clinicians. Doctors and nurses need constantly to update their skills and keep abreast of the latest developments. Good CPD is therefore vital for improving patient care and spreading innovation throughout the NHS.
Evidence of participation in CPD activities is a compulsory requirement for the revalidation of doctors in order to demonstrate continuous fitness to practice. In April 2013, the General Medical Council published the results of a study that aimed to assess the impact of CPD on doctors’ performance and patient and service outcomes. The study underlined the importance of CPD in maintaining competence and identified a lack of funding and a lack of allocated time as key barriers to undertaking CPD.
CPD used to be funded through the national multi-professional education and training budget—I remember because I used to be given an annual budget. If you did not spend it, initially you could not carry it over but latterly you could. Lots of other doctors did not take advantage of it, so those like me who did benefited even more. However, it is no longer funded in that way. Currently, the funding is tight and there is a risk that CPD funding for medicine and other clinicians will be cut at the expense of other areas. The Council of Deans of Health, for example, says that reductions in education and training budgets are most likely to impact on CPD compared with other areas of education and training.
I saw that as part of its strategic intent document, Health Education England recently announced that it would ensure greater investment in CPD for staff currently in post, but I feel that further clarification is needed about what this will mean in practice. It is presently unclear what level of funding is provided for CPD across the NHS. In their response to the Future Forum report on developing the NHS workforce in June 2011, the Government said that they would,
“explore ways to provide greater transparency about the overall level of investment across the [education and training] system, including for continuing professional development”.
I am sure that the Government are taking steps to make sure that this happens and I am keen to know what the noble Earl has to say.
At present CPD is a responsibility for healthcare providers, but there is no requirement in the Bill on HEE or LETBs to support this or to monitor how providers are supporting CPD. Again, the GMC-commissioned report, The Effectiveness of Continuing Professional Development, found that trusts varied from being “generous” to “not interested” in providing CPD opportunities for staff. While both Health Education England and the local education and training boards have a clear role to support training more broadly, it is unclear to me how they will currently support CPD for all clinicians as distinct from other types of training that apply to other healthcare workers. My amendment would therefore place a clear requirement on local education and training boards to set out how they would support CPD for clinical professions. I hope that the Minister will find in favour of it, particularly as I feel it is something that got left out, having been included in the original draft Care and Support Bill. I beg to move.
Earl Howe
I probably expressed the position less than well because I was seeking to indicate that CPD is inescapable. There are a whole host of reasons why providers and the LETBs cannot avoid a focus on continuing professional development. Equally, we do not want to prescribe any kind of ring-fenced budget for CPD, for the reasons we debated earlier: we are clear that we must leave it to LETBs to exercise autonomy in the way that they work out their local education and training plans. They will have to prioritise, inevitably, in certain cases and from year to year. It may be that they will have to make hard choices. The great thing about Health Education England is that, as a non-departmental public body separate from NHS England, it will have a dedicated budget which cannot be eroded by those who might wish to siphon money off to patient care, for example. I hope that, in that sense, the noble Lord, Lord Turnberg, can take some comfort. We are very clear that the prescription is there and that local providers cannot avoid addressing the needs of their employees for CPD, but at the same time we do not want to dictate to them how much to spend on this in any one year.
Lord Patel
My Lords, I thank the Minister for his reply. I have no doubt whatever that he speaks with conviction and is full of good intentions. However, the way in which he spoke makes me feel that he, too, has some doubt that local providers and employers will deliver on this. If LETBs do not have any duty even to collect information about continuing professional development, local providers may not take any notice of the issue; there will be that variability in their reactions to which the noble Lord, Lord Turnberg, referred. However, I have no doubt that the Minister and the department have the intention that this will be delivered. We will reflect on that. In the mean time, I beg leave to withdraw the amendment.
Care Bill [HL]
Lord Patel Excerpts(11 years, 6 months ago)
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Lord Patel
My Lords, the Government have to be commended on bringing forward this Bill to reform the current system of social care and thus bringing in a fairer system. Many noble Lords have commented on the financial issues, saying that adequate finances will be required to make sure that the ambitions of the Bill are delivered. Noble Lords have also commented on another important issue, that of the eligibility criteria that are to be used. If these two things are not met appropriately, the duties being placed on local authorities in Clause 1—promoting well-being, preventing deterioration and reducing need—will be difficult to meet. It will also mean that more people end up in A&E, in primary care and as in-patients.
I am concerned about two other issues. As yet, the Government have not accepted the need to provide free care and support for cancer patients at the end of life. I remain encouraged by the comment made by the noble Earl when we considered this issue in the debate on the gracious Speech. He said that there was “much merit” in the idea. I hope that he will be able to convert the thought that the proposal has much merit into an amendment that the Government will bring forward.
A survey by Macmillan Cancer Support has shown that 91% of cancer patients at the end of life wish to die at home or in surroundings familiar to them. The barrier to this is the lack of care and support they need along with complicated, lengthy and stressful processes to access funding for care. Financial means testing when patients are dying does not seem to be compassionate or caring. The argument for providing free social care at the end of life is strong. It will deliver the Government’s vision of integration and choice. Research by the Nuffield Trust shows that a saving of some £52 million a year could be made through reduced hospital admissions. I hope sincerely that the Government will amend the legislation to do this, or accept an amendment that I will bring forward.
There is also the issue of the support that the carers of cancer patients get or, rather, that they do not get. Almost 1 million cancer carers give their valuable time to this, saving services probably in the region of £12 billion a year, yet half of them receive no support at all and the other half very little. This is partly because most of them do not see themselves as carers and are unaware of their rights; fewer than 5% get any assessment at all. What would help is if a similar duty as the Bill puts on local authorities is placed on the NHS to work with local authorities to identify the support needs of carers who are themselves supporting cancer patients. Cancer carers will then receive the support they deserve.
The other areas of concern to me relate to Clauses 55 to 63, also referred to by the noble Lord, Lord Rix, and I associate myself with his comments. I want particularly to make a point about the support and care of children and young adults during the transition period. More than 40,000 children and young people aged between one and 19 in England have long-term conditions which, for the most part, will end their lives or for which they will require palliative care. They may have complex health conditions and severe disabilities, and for the most part they are looked after by parent carers. This is not end-of-life care, but care that brings some comfort, respite, the relief of suffering, and a little bit of quality of life. Evidence shows that while they are children and in their early teens, these young people receive support from children’s services. In their late teens they begin to receive services from adult services, but that support is often reduced, fragmented and disjointed. Parents describe this transition of care as “standing on a cliff, about to fall into a black hole”. It is not difficult to imagine the stress and anxiety it must cause to young people and their carers.
The proposals in the Bill are a step forward, but in my view they need to go further. A consortium of charities which has grouped together under the charity, Together for Short Lives, feels that this provision needs to be strengthened. The Bill should make it clear that when a young person reaches the age of 14, local authorities should initiate transition planning with the young person, their family and the relevant agencies, so that by the time they reach the age of 16 a five-year rolling programme for their support and care is in place. I hope that the Government will be sympathetic to this and that the Minister, if he is able to do so, would be willing to meet with representatives from Together for Short Lives and myself.
Part 2 of the Bill relates to performance rating. I support in principle the idea of introducing a system that assures quality of delivery of health and social care. Suffice it to say at this stage that whatever the final system that is introduced is like, it has to be credible and have the confidence of both patients and health professionals. If it is going to be based on three domains of quality—clinical effectiveness, patient experience and patient safety—the dataset needed to achieve this in an equitable and fair way is available for some areas, but not all of them. I hope that the Government will see the introduction of assessment as formative and embedded over a period of time, evolutionary in helping to develop appropriate datasets leading to improved services, rather than a one-off assessment that identifies only failures and shortcomings. I am very familiar with a system based on standards that encompass the three quality domains of clinical effectiveness, safety and patient experience, but using a different process that works. I know of no system within our national healthcare that is similar to the proposals, although of course there are large healthcare providers which are using a similar methodology. I look forward to the debate on this subject and hope to contribute to it.
Perhaps I may comment briefly on the other parts of the Bill, starting with Health Education England. In my view, the Government have brought in provisions that we agreed in principle in the Health and Social Care Bill. The Government have to be commended on doing this and I thank the noble Earl. I am also encouraged by the appointment of Professor Wendy Reid as the medical director. Health Education England will have someone with huge experience and skills in health education. My only comment relates to the local education and training boards. Why is there not a duty placed on them to promote research and research training, a point also mentioned by the noble Lord, Lord Willis of Knaresborough?
As for legislation related to the Health Research Authority, its current role is small and we will want to see how it evolves. I recognise the comments made by the noble Lord, Lord Willis, about too many regulators in the area of health research. I hope that the Government will look at this, while the inquiry into regenerative medicine may also give rise to some comments. I think that the Government are right not to put a duty on the Health Research Authority to require the publication of the results of research. It is much better that the authority should work with others to encourage the publication of research and that it develops over time an appropriate methodology. The mandatory publication of research by the authority would have been the wrong thing to do. It does not work; it has been tried in other countries, including the United States.
As for the Human Fertilisation and Embryology Authority, the original Government thinking was right, but now that they have changed their mind and have decided to keep the authority, I hope that it concentrates on its key role of improving services related to infertility.
In conclusion, on the whole I am supportive of this Bill and hope that the Government will be sympathetic to amending some of the areas I have alluded to in order to help improve the lives of those most in need of care and support.
Health: Cancer
Lord Patel Excerpts(11 years, 6 months ago)
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Earl Howe
My Lords, the noble Lord makes a good point. When recording the cause of death on a medical certificate of cause of death, doctors are required to start with the immediate, direct cause of death and then go back through the sequence of events or conditions that led to death until they reach the one that started the fatal sequence. This initiating condition will usually be selected as the underlying cause of death according to the International Classification of Diseases coding. However, that does not mean that someone with a primary cause of death of cancer will not have pneumonia, or whatever it happens to be, recorded somewhere on the death certificate.
Lord Patel
My Lords, does the Minister agree that as we progress with the current research into the molecular tagging of drugs that have the same molecular make-up as the cancer itself and nanomedicine we will be better able to target cancer tissue while leaving normal tissue alone? That will save lives lost to the complications related to treatment.