Jimmy Savile: NHS Investigations

Baroness Wheeler Excerpts

Thursday 26th February 2015 Lords Chamber

[Baroness Wheeler (Lab)]

My Lords, I thank the Minister for reading out the Statement, for early access to the two reports and for the briefing that he held this morning. The Statement rightfully acknowledges the clear failings in the security, culture and processes of many NHS organisations that meant that terrible abuse was allowed to continue unchecked over many years. As the Statement says, that abuse was horrific, caused immeasurable and often permanent damage, and betrayed the trust of vulnerable people who had reason to believe that they would be safe.

It is right for the Statement to repeat the Secretary of State’s apology made last June when the first 28 investigations into matters relating to Savile were published, and I know that I speak for the whole House when I emphasise our support for his decision to do so. I also add our gratitude and thanks to all those who have been involved in the preparation of the reports, in particular Kate Lampard and Ed Marsden for their key themes and lessons-learnt report. Through their diligence, the full scale and horror of Savile’s sickening behaviour across the NHS has been laid bare. It beggars belief that abuse on this scale, known to so many people, was allowed to go on for so long.

However, as the analysis of what happened becomes more complete, the key question and concern that will be growing in the minds of people hearing this news today is the matter of accountability and the disturbing evidence that people knew what Savile was doing but failed to act. Much of what is revealed in these reports today confirms what we already knew about a pattern of criminal behaviour in the hospitals concerned, where patients and victims were not listened to and staff felt unable or unwilling to challenge. But what changes today with the Stoke Mandeville report is that it is now no longer possible to say that although the abuse was widespread, it was not known to some of those in senior positions. Nine verbal reports and one formal complaint were made but none was acted upon.

The question why does not extend just to senior staff at the hospitals. As today’s Stoke Mandeville report says:

“From 1980 Savile’s relationship with Stoke Mandeville Hospital underwent a significant change when he was appointed by Government Ministers … to fundraise for … the new National Spinal Injuries Centre”.

As the lessons-learnt report observes:

“In appointing Savile to these roles and in allowing him the licence and free rein he had in exercising these roles ministers and/or senior civil servants either overrode or failed to observe accepted governance processes”.

That is an extremely serious finding and needs to be acted upon. While of course I do not expect the Government to respond to this today, does the Minister not accept that this finding points to the need for a more formal process of inquiry into senior people in the hospitals and at the Department of Health? This includes former Ministers who did not follow the due processes. Knowing what we do, we cannot leave this here. Victims must have accountability, and that must be our shared goal across this House.

Alongside accountability, the victims of Savile also need help now. Many people who were damaged by what happened have never recovered and continue to suffer; some victims have died. In the June Statement, the Government said they would continue to explore compensation for the victims, including the use of Savile’s estate to fund any claims. Can the Minister update the House on that work, and whether there is any value left in that estate? Will this be sufficient, or is there a need for public funding to help victims? Today’s news will again be traumatic and distressing for everyone directly affected. Can the Minister tell the House what steps are being taken to offer counselling and other support to the victims?

I turn to the lessons-learnt report. We need to stress that, while these appalling events come from a very different era, it would be a major mistake to think that they have no relevance today. As one of the report’s chilling conclusions sums up,

“the evidence we have gathered indicates that there are many elements of the Savile story that could be repeated in future”.

Even though the world was different in the 1970s and 1980s, it is impossible to read these reports without wondering how so many people could have known about what was happening but felt unable to act. It must never again be the case that a member of staff is made to feel they would be letting down the hospital if they act to report abuse.

We have welcomed and supported the action the Government are taking to support NHS whistleblowers—for example, the provisions in the Care Act which put adult safeguarding on a statutory footing—but we cannot think complacently that this will be enough in these situations. Action is needed across schools, hospitals and childcare settings. We need co-ordinated, joined-up government action in response. Does the Minister agree that introducing a mandatory requirement for people in positions of trust to report abuse should be an early legislative priority for the next Parliament, whichever party is in office?

It is also evident from the report that we need to look again at changes to the vetting and barring system. Recent changes mean that convicted sex offenders are only added to the list if they are working in professions with access to children. This means that there are thousands of sex offenders who are today not on the list but perhaps should be.

Finally, in the context that Kate Lampard identifies, of a coming era in which hospitals will be more reliant on volunteers and fundraising, and in the light of the comments in the Statement, do the Government still stand by the changes to vetting and barring, or is there a need to tighten this still further?

This report charts appalling, sickening events and places a dark cloud over the NHS. We applaud the Secretary of State and the Government for the commitment they have shown in response to these reports, and we pledge our full support to help bring about accountability and justice for the victims.

Care and Support Regulations

Baroness Wheeler Excerpts

Thursday 12th February 2015 Lords Chamber

Moved by

[Baroness Wheeler]

That this House takes note of the 17 negative instruments relating to care and support laid before the House between 24 and 31 October.

Relevant document: (See Negative Instruments list) 14th Report from the Secondary Legislation Scrutiny Committee

[Baroness Wheeler (Lab)]

My Lords, following last week’s consideration of the affirmative regulations, I very much welcome the opportunity for further discussion and scrutiny of the implementation of the Care Act. These 17 draft regulations range widely across key aspects of the implementation: the updated assessment process for care and support for adults and carers; the charging, personal budget and direct payment arrangements, and deferred payments; and the NHS/local authority interface for providing care and support, particularly continuity of care. These are important issues and our consideration of them is also very timely, with the publication last week of the Government’s consultation on the draft regulations bringing in phase 2 of the Care Act implementation, on the cap on care costs. I do not intend to go into any of the details of the consultation today; suffice it to note that, at this stage, the closing date for responses to the phase 2 consultation is 30 March 2015—with, of course, the small matter of a general election in between.

For the record, too, this is the third debate we have had on regulations implementing the Act. My noble friend Lord Lipsey, who unfortunately cannot be in his place today, raised a number of key issues in relation to the deferred payment regulations in a debate in the House before Christmas. I do not intend to repeat that debate today, other than to remind the House about my noble friend’s continued concerns over the confusion he fears will be caused by bringing in the regulations this April rather than under the phase 2 implementation of the cap on care costs in April 2016. I also underline the widespread frustration of care and support organisations, and of many noble Lords, that the take-up of the scheme is likely, in reality, to be pretty low because of the Government’s decision to limit it to those with less than £23,250 in non-housing assets.

I begin today’s consideration of the regulations by underlining that, while I was very happy to expedite the business of the House by taking all 17 regulations together, I hope that the House will bear with me again as there are a number of areas to cover in relation to both the implementation of the Care Act and some of the individual SIs. I also take the opportunity to thank the Minister for his very helpful follow-up letter responding to issues raised during consideration of the affirmative regulations that he did not have time to address.

I turn first to the regulations on the assessments for adults and carers, which update the process to reflect the focus on outcomes on the basis of best practice, existing policy and consultation. These regulations improve and develop previous guidelines, particularly the requirement for the assessment to consider the impact of the person whose care needs are being assessed on their carer and their family. I know I would say this, but it is so important to ensure that the carer’s physical, mental and emotional well-being are part of the assessment of an adult’s need for care, as well as the impact of caring on the family as a whole. There are still concerns about how the provisions for local authorities to delegate the carrying out of and decision-making on carers’ assessments will work in practice and on the issue of charging a carer for support to meet their needs, but my noble friend Lady Pitkeathley will address these in her contribution.

We also welcome the specific reference in the assessment regulations to the assessment of people with fluctuating health conditions such as MS and Parkinson’s disease, where symptoms can vary unpredictably by the month, day and week. My noble friends Lord Dubs and Lady Gale advocated this strongly during the passage of the Bill, and we welcome the duty placed on local authorities to ensure that assessments for these and similar conditions take account of the person’s state of health over a period of time. Parkinson’s UK is concerned to ensure that local authorities interpret this provision in terms of months rather than weeks, to establish patterns of care need as well as more rapid fluctuations over a 24-hour period. I would welcome the Minister’s reassurances on this.

As with a number of other conditions, everyone’s experience of Parkinson’s is different and may include, at a particular stage in time, motor symptoms, slowness or rigidity, physical symptoms such as pain, fatigue or bladder or bowel problems, and mental health conditions such as anxiety or depression. It is very important to have the person’s condition assessed over a suitable period.

During the pre-Christmas debate on deferred payments, my noble friend Lord Hunt raised our concern that assessments should be retrospective to the date on which the applicant makes his or her submission for an assessment, rather than on the date that the local authority conducts it, which could be delayed due the authority being overwhelmed with applications and lacking the capacity to deal quickly with them. We were thankful to the noble Baroness, Lady Jolly, for clarifying this in her letter of 12 January, which stated:

“If a local authority was delayed in performing a person’s assessment, their progress towards the (care) cap would apply retrospectively and be backdated accordingly to ensure they were not worse off as a result”.

We were grateful for this important reassurance, but I am not sure that local authorities are clear on this and on when backdating takes effect. They continue to be concerned at the prospect of having to assess whether need would have met the threshold at the time of application. Can the Minister further reassure the House that the Government’s clarification on this matter will be contained in national guidance and that it will not just be left to local discretion or interpretation? Consistency across local authorities on the basis for recording information and data on care accounts is vital.

Finally, on capacity, we need to come back again to local authorities’ continuing concern about the adequacy of funding for phase 1 of the Care Act’s implementation in the face of modelling that shows increasing support needs for councils around IT, workforce and information advice. As careful as the modelling work undertaken by the joint LGA/ADASS/Department of Health programme management office has been, the fact is that take-up on assessments, particularly from self-funders wishing to start the process rolling for costs to be counted towards the cap, can only really be estimates at this stage.

I know from personal experience and from speaking to other carers caring for people with significant care and support needs that the questionnaire for assessment of applicants with complex needs and their carers is on average 40 pages long, taking two or three face-to-face briefings and interviews with a social services team member. There are a number of follow-up processes, too, such as the verification documentation for any agency provider of care; health and welfare assessments; medical management assessments; moving, handling and safeguarding assessments, and so on. Then the all-important financial assessment process is to be faced. These are processes that need to be thorough; they are not simple, quick and straightforward administrative processes for councils. However, I recognise that many assessments will be more light-touch self-assessments, for individuals concerned with getting their details “logged” so that their accrued costs can begin counting towards the cap.

The LGA has called for financial compensation for councils that are shown under the monitoring framework being developed by ADASS to have incurred extra implementation costs over and above their 2015-16 allocation. The Minister’s correspondence assures me that monitoring data on this will be collected during 2015-16 to determine whether the estimated costs outlined in the impact assessment are accurate, and that additional funding costs would be considered as part of the next Government’s spending review—so we will leave it at that at this stage.

The regulations covering the charging and assessment of resources are more than 20 pages long and are not for the faint-hearted. They broadly follow the previous process for calculating what a person can afford to contribute towards the cost of their care, setting out the £23,250 cap on local authority contributions towards residential care but now also providing for councils to be able to pay towards the cost of care and support of a home care user or carer whose savings total more than this amount.

This extension to the home care situation is welcome, as is the setting of the minimum income requirement on a regulatory basis for those in non-care accommodation and, as I understand it, their carers. The specific thresholds for this reflect income support thresholds, but may I ask the Minister why the previous practice of the thresholds being adjusted annually for inflation has not been followed? Is this now being left to local authority discretion?

On pensions, I notice in Regulation 16 of the charging and assessment of resources regulations the reference to pension annuity payments being treated as income. While this reflects current practice, it brings us back once again to the thorny issue of the interaction of pension flexibilities under the Pension Schemes Bill with the benefits and social care means tests, and how pension pots will in future be treated for assessment of care and support. The Minister will recall that I questioned him last week on the Department of Health’s involvement in ongoing discussions on this following the dogged attempts made by noble friends on this side to get Ministers dealing with the Bill to acknowledge and address this problem.

I understand from the response of the Minister, the noble Lord, Lord Newby, at Third Reading that in relation to means-testing for benefits or care and support we are now in the position that, if cash is drawn from a pension pot, it will not be dealt with as income. However, ISA savings will be counted as capital unless transferred to a pension pot, and not be deemed as deprivation of assets if the funds are so transmitted. The Minister has confirmed this to me in his letter. According to the noble Lord, Lord Newby, the Government intend to issue what they call “clear guidance” on the treatment of pension pots in income-related benefits in advance of April, when the new pension provisions come in, and thereafter to monitor the situation and, “respond proportionately if we need to”, in the words of the Minister.

The letter of the Minister, the noble Earl, Lord Howe, reassures noble Lords concerning the Department of Health’s involvement in the development of the Pension Wise service, which will issue guidance on these key areas. He is also confident that the duty placed on local authorities to facilitate independent financial information and advice will enable them to provide the support that people need to make informed choices. However, these are very complex issues and the advice across government departments and from local authorities needs to be clear and consistent. I would welcome the Minister’s assurance that he has full confidence that this will happen.

The final batch of regulations deal with important interface issues between the NHS and local authorities, such as: hospital discharges to local authority care; interaction between clinical commissioning groups and councils; the provision of NHS continuing care; and ensuring continuity of care when an individual receiving care and support intends to move from one local authority to another—the portability provisions so hard fought for by the noble Baroness, Lady Campbell, who is unfortunately unable to be in her place today. Overall, these regulations are important to the improvement of NHS and local authority co-operation and joint working, which are so vital to the future successful integration of care and support. I was pleased to see that, under the hospital discharge regulations, the fines that the NHS can impose on local authorities for delayed discharges of patients from acute hospitals are now optional rather than obligatory, reflecting the fact that most hospitals apparently no longer impose these fines anyway. This is a welcome change as, in the past, too many patients and families have been caught in the middle of some very unpleasant rows between hospital and council over funding responsibility. That is a very upsetting place to be at a time of great uncertainty and trauma for the patient, carer and family.

I want to raise an important issue on the question of care and support regarding ordinary residence. The Care Act regulations extend types of accommodation where a person’s ordinary residence would be deemed to remain with the original authority to cover shared life schemes and supported living, which provide excellent support for people with complex care and support needs. These regulations are designed to resolve disputes between authorities but will do so only if it is clear and unambiguous who is and is not covered. Section 39(1) states that an adult is covered by this only if their needs can be met in specified circumstances.

However, the Care & Support Alliance is concerned that there is a significant risk that local authorities will dispute whether needs can be met only in such accommodation, which will still leave many people with high support needs as the subject of disputes about which council will fund their support. Section 39(3) allows for the making of regulations to clarify this, but these powers do not appear to have been used in the regulations covering the ordinary residence position. Are the Government confident that the definitions in the Care Act regulations are clear enough to prevent disputes between local authorities? Why are the powers in Section 39(3) not being used to clarify Section 39(1)? Does the Minister acknowledge that the reference in the latter subsection to,

“needs for care and support which can be met only if the adult is living in accommodation of a type specified in the regulations”,

will cause confusion and disputes unless properly clarified?

I have one more important issue to address before I conclude. What role do the Government expect health and well-being boards to play in overseeing the implementation of the Care Act? I ask this because we would have expected the role to be a key and strategic one. Yet both the feedback from local authorities and the comments in the King’s Fund’s recent review, The NHS under the Coalition Government, about the current readiness of many health and well-being boards to tackle the key strategic issues facing them, are deeply disappointing and disturbing. HWBs have been operational for more than 20 months and were to be the key vehicle for integration and collaboration under the Government’s restructured NHS.

The House will recall that we strongly supported those boards and advocated increased powers to give them the vital leadership, impetus and support to joint working and co-operation across health and social care that was needed. Yet the King’s Fund’s assessment of their performance so far is pretty stark:

“While the creation of health and wellbeing boards was widely welcomed, their impact and influence has been variable, and generally limited ... Boards have shown few signs of being able to provide the collective leadership needed to tackle the urgent issues facing their local systems, and have often chosen to prioritise other issues ahead of promoting integrated care”.

--- Later in debate ---

[Baroness Wheeler]

I thank the Minister for his response. It is customary to say, “It has been an excellent debate”, but since only three of us spoke I will say that it has been informative, very valuable, and that all contributions have been excellent. I particularly welcome the Minister’s comments around the carers’ organisations and that he will keep that situation under review. I am sure that he will meet carers’ organisations if he needs to, if there are continuing concerns.

I will finish by reiterating our strong support for the key principles of the Care Act. The majority of the foundations of the Act build on work started by Labour—the personalisation of care agenda, personal budgets and direct payments, independent living, the national carers strategy, and the groundbreaking work of the Law Commission to consolidate six years of fragmented social care legislation—and of course carried through by this Government. However, we said from the outset that implementing the Act in the face of significant funding cuts and financial pressures faced by local authorities would be a huge challenge, and so it is proving. It will be particularly so for the phase 2 implementation of the cap on care costs. Whichever party is in office after May will need to work closely with local authorities and with care and support users and organisations to monitor implementation of the Act and make decisions accordingly.

Motion agreed.

Care and Support (Business Failure) Regulations 2014

Baroness Wheeler Excerpts

Tuesday 3rd February 2015 Grand Committee

[The Parliamentary Under-Secretary of State, Department of Health (Earl Howe) (Con)]

My Lords, I come before the Committee today to introduce the draft affirmative regulations under Part 1 of the Care Act 2014. The regulations before us relate to some of the most important elements of the Care Act, which consolidated 60 years of fragmented legislation into a single modern statute built around the needs and outcomes of a person.

Following Royal Assent for the Care Act in May 2014, the Government published final statutory guidance and laid those regulations subject to the negative procedure before Parliament in October and November, as well as laying these regulations in draft. In keeping with the collaborative approach that we have sought to maintain through the development of these reforms, over the summer the Government conducted an extensive public consultation on the guidance and regulations, including draft versions of the regulations that we will consider today.

The consultation engaged the full spectrum of stakeholders including: people receiving care and support and their carers; social workers and other front-line practitioners; local authority commissioners; social care providers; national representative groups; and NHS bodies. In total, the consultation drew more than 4,000 responses from many different sources. Responses were carefully analysed and, where appropriate, changes were made to regulations.

I will briefly introduce each of the four statutory instruments. I turn first to the Care and Support (Business Failure) Regulations 2014 and the Care and Support (Market Oversight Criteria) Regulations 2014. I will address these together as they form the two pillars of our broader strategy to protect people from provider failure. There is a diverse provider market in adult social care where entry and exit is a regular occurrence. Local authorities are currently able to intervene to meet needs in relatively rare cases where services are closed at short notice and individuals are put at risk—and historically they have done so effectively.

The Care Act places specific duties on local authorities in Wales and England, and their broad equivalents in Northern Ireland, to temporarily step in and meet needs where a provider is no longer able to carry on because of business failure. The business failure regulations set out the meaning of “business failure” generally by reference to different types of insolvency, for example administration and winding up. This approach ensures that people receiving services are protected in the event that their provider enters insolvency, without diluting the core responsibility of providers to deliver care services under normal circumstances.

The social care market includes large care providers, operating across much of England, whose financial failure, were it to happen, would cause local authorities considerable difficulty in carrying out their business failure duties without early warning. One such recent example was in 2011 when Southern Cross, then the largest provider of residential services in England, was threatened with insolvency. Local authorities had no prior warning of its financial position. While few people eventually had to change care home, the Government recognised that the degree of worry for people receiving care and their families was unacceptable.

The Care Act accordingly places new duties on the Care Quality Commission to assess the financial sustainability of certain registered care providers. The CQC will do this by collecting and analysing financial information. The CQC may respond to significant risks identified to the financial sustainability of a provider by requiring it to develop a plan to mitigate any risks identified, or ordering an independent review of the business. Should the CQC be satisfied that a provider is likely to fail, it will provide relevant local authorities with an early warning and the information that they need to prepare adequately to protect the continuity of care for individuals. Where the CQC is not satisfied that the provider is taking all the necessary steps to return to financial health, or it feels that it has not been given the necessary information to assess financial sustainability, it is able to take a range of regulatory actions, up to and including the deregistration of the provider in question.

The Care and Support (Market Oversight Criteria) Regulations set the entry criteria for the CQC’s financial oversight regime. Any provider meeting those criteria will be subject to the CQC’s regulatory activities that I have described. They have been designed to capture those providers that—because they are particularly large, geographically concentrated or operate in a large number of local authority areas—would be “difficult to replace” were they to fail financially. It is important to note that inclusion in the regime is a comment not on the likelihood of failure but rather on the risks that would be posed should the provider get into difficulties.

The Care and Support (Children’s Carers) Regulations 2014 relate to the power in the Act for local authorities to support carers of children in a similar way to that in which they support carers of adults, setting out how the rest of Part 1 of the Act applies in this situation. It is important to note that this power applies only in the limited circumstances where carers of children have received a transition assessment in preparation for beginning to receive support under the adult statute, but the transition has not yet actually taken place.

The broad principle at work will be that adult carers of children are supported under children’s legislation, while adults caring for adults will be supported under the Care Act. This instrument is merely an acknowledgement that some flexibility in this regard may be desirable around the time of transition. The instrument has been carefully drafted to ensure that it does not replicate the support for carers of children under other legislation, so ensuring that there remains a clear division of responsibility. These regulations allow for flexible and personalised approaches to support, without forcing local authorities into unnecessary changes to different, broader policies for carers of children and of adults, which exist for good reasons.

Lastly, the Care and Support (Eligibility Criteria) Regulations 2014 set out the national eligibility criteria for adult care and support and carer support. All local authorities will at a minimum have to meet this threshold and cannot tighten their criteria beyond it, although they will have a power to meet needs that were not considered eligible. The national eligibility threshold has been set at a level where the person’s care and support needs, and their inability to achieve certain outcomes as a result, have or are likely to have a “significant impact on their well-being”. This is intended to have a similar effect to the eligibility level that the vast majority of local authorities operate at present. Together with funding announced in the 2013 spending round, this will allow local authorities to maintain the level of access to care and support when the new system is introduced in April 2015.

Given the critical importance of the eligibility criteria, the Government have been especially careful to ensure that they have taken account of the full views of all relevant stakeholders. The Department of Health carried out an extensive engagement to gather views on an initial version of the regulations from June to December 2013, and engaged the Personal Social Services Research Unit at the London School of Economics to evaluate the draft regulations against current practice. These findings informed the second version of the eligibility regulations that were consulted upon in summer 2014.

Alongside the consultation, the department asked PSSRU to evaluate the second draft of the regulations, working with 27 local authorities to compare the draft regulations with recent cases. We made a number of changes to refine the criteria on the basis of feedback and independent research. We have also worked closely with stakeholders to test the approach. I am confident that the final version before us fulfils the Government’s commitment to replicate the current access to care and support in setting the national criteria.

These regulations are required to meet fully some of the central aims of the Care Act: protecting people from the reality of provider failure and the extreme worry caused by its spectre; providing flexible and appropriate support for carers; and ensuring more consistency in people’s rights to care and support. I commend these statutory instruments to the Committee.

[Baroness Wheeler (Lab)]

I thank the Minister for his comprehensive introduction to these four important affirmative regulations. As he knows, I also have a take note Motion tabled for next week on the negative regulations on implementing the Care Act. Inevitably, there will be overlaps between today’s debate and next week’s but I hope that we can clear off some of the major issues today. The four SIs cover a number of important issues so, while we were happy to have them taken together to expedite the business of the Committee, I hope that the Committee will bear with me since there are a number of areas to cover in relation to implementation of the Care Act and the individual SIs. I also thank the Minister for the very helpful briefing meetings that he has had with Opposition Front Bench health team members on the regulations. He will know that both the Opposition’s health and local government teams are keeping a close watch on how the Care Act is being implemented, so we were grateful for the time that he took on this.

We believe strongly that this first phase of implementation has to be viewed across both the local government and health departments, and considered in the context of the huge funding pressures on local authorities, with a 40% cut in their funding since this Government took office. The Minister, of course, disputes this figure and others from independent bodies on the scale of local government cuts cross the piece and their devastating knock-on impact on social care. Whether the figures are from the King’s Fund, the Nuffield Trust or Age UK, they all put the scale of cuts to social care budgets in terms of billions of pounds.

Recent figures from the Association of Directors of Adult Social Services, with which the Department of Health has worked closely on the Care Act’s implementation, point to this year being the third year of continuing cash reductions and the fifth of real-terms reductions in spending on social care. It points out that, since 2010, social care spending has fallen by 12% while the number of those looking for support has increased by 14%. Social services departments have been forced to make savings of 26% in their budgets—the equivalent of £3.53 billion over the last four years. Compared to 2009-10, almost 300,000 fewer people over the age of 65 are receiving state-funded care.

On many previous occasions, the Minister has set out the additional funding being made available for Care Act implementation—and, despite the challenges, the recent DH stock-take shows encouraging overall progress in local authorities’ readiness for the phase 1 implementation from April 2015. Like the department, we commend the role of the joint LGA/ADASS/Department of Health programme management office. We fully recognise the scale and extent of the work that has gone into consultation exercises with stakeholders, the drafting of the regulations and guidance and the joint working on implementation with local authorities.

However, the same stock-take also makes clear councils’ continuing concerns about the adequacy of funding in the face of modelling which shows increasing support needs for local authorities around IT, workforce, information advice, carers and market shaping. Workforce capacity is a particular concern. The LGA view is that these aspects of implementation of the 2015-16 reforms may be underfunded by as much as £50 million.

Before moving on to the regulations, perhaps I may refer quickly to the Government’s plans to close down the Independent Living Fund in June 2015. We seek reassurances from the Minister that the funds transferred to local authorities from that fund will continue to be used to provide vital support for the disabled people who currently depend on it to be able to live independently in the community and have the same rights, choices and chances as any other citizen. My understanding is that it will be for individual authorities to make decisions on how the resources from the fund will be applied. Will the Government issue guidance to help protect the thousands of disabled people currently receiving ILF support who are affected by this decision? How will they ensure that the money is not just diverted into helping to fund the Care Act implementation or into general funding support for social care services?

The care and support regulations on the market oversight criteria, the interlinking negative regulation on market oversight information—covered by my take note Motion next week—and the business failure regulations are about trying to prevent the sort of problems witnessed in 2011 with the collapse of Southern Cross Healthcare, as set out by the Minister, by empowering the Care Quality Commission to monitor and obtain financial information from providers to check their financial stability and spot the early warning signs of potential difficulties and failure. The aim is to protect vulnerable people and their families if there is provider failure, to ensure that local councils have both early warning and support to be able to maintain vital continuity of support and to ensure that no one depending on the service will suffer.

Health: Human Papilloma Virus

Baroness Wheeler Excerpts

Tuesday 20th January 2015 Lords Chamber

[Baroness Wheeler (Lab)]

My Lords, I, too, am very grateful to my noble friend Lord Patel for securing this debate and providing the opportunity to address this important issue. I also pay tribute to his contribution and work as chair of the All-Party Parliamentary Group on Men’s Health and to his dogged and persistent campaigning on the need to give teenage boys the HPV vaccine to prevent men getting cancers. Indeed, we have been very fortunate today to have the expert contributions from other strong campaigners on this and other key sexual health issues.

As we have heard, there is certainly a compelling case for challenging the Joint Committee’s 2008 conclusion that evidence did not support applying the universal programme of HPV vaccination for girls to boys. We have heard today how the contention that for boys such a programme would provide little additional benefit or be cost effective—because vaccine efficacy was high, and high coverage in girls would provide herd protection for boys—is increasingly difficult to sustain.

HPV Action, which leads the campaign for a gender-neutral HPV vaccination programme, is an authoritative voice on this issue and an umbrella body whose members include a wide range of leading public health, cancer, oral health, sexual health and men’s health organisations. The BMA, the Royal College of Physicians, the Royal Society for Public Health, and the charities Cancer Research and others, such as Jo’s Cervical Cancer Trust, all strongly support the campaign for the vaccine and the vaccination itself. The latter stresses that vaccinating both girls and boys at a young age may be the best way to achieve the greatest protection for females against the risk of cervical cancer, and that extending the vaccine to boys would provide universal protection to both sexes from many other HPV-related cancers. The BMA points to “overwhelming evidence” supporting extending the HPV vaccine to all boys as well as girls before they start having sex. Indeed, there is growing consensus in the UK and internationally that extending the HPV vaccination to boys represents the only effective, equitable solution to ensure that all are protected.

We can also acknowledge that the JCVI’s recent recommendation for men who have sex with men—MSM—to be offered HPV vaccinations when they attend sexual health clinics is an important step forward. However, we have heard today the strong concerns that this is not enough to protect MSM, and that the reality is that most MSM will remain unvaccinated. The most effective protection for MSM and heterosexual men is to vaccinate all adolescent boys before they become sexually active. The JCVI consultation on MSM ended this month. Does the Minister have any update on the level of response and do the Government have an estimated date for receiving the JCVI’s final advice?

There is also strong evidence that vaccinating boys will also help to protect women. The Royal Society for Public Health says:

“While the vaccination for girls does offer herd immunity for boys, this doesn’t take account of transient populations and presumes that males remain within the herd. Men may still contract HPV elsewhere (e.g. travelling abroad) or from females in the UK who have had the vaccination”.

On HPV vaccine for adolescent boys, the JCVI, in its November 2014 MSM interim statement, expresses disappointment that the modelling work on the impact and cost-effectiveness of the programme by Public Health England is not able to begin until this year, when, as we have heard, it had originally been expected to have taken place so that recommendations could come through this year. The JCVI is right to stress that it would be inadvisable to take shortcuts in the process of modelling which might undermine the validity of the results, but I hope that the Minister acknowledges the widespread concern that the delay and the revised estimated date for the recommendations of early 2017 is causing. I hope that he can shed some further insight on the reasons for the PHE delay and on what action the Government will be able to take to help the JCVI bring this date forward. The HPV action estimate is that every year that passes leaves 400,000 boys unvaccinated and unprotected. That is a worrying figure indeed. The noble Baroness, Lady Hollins, expressed particular concern about the position of boys with learning difficulties. I look forward to hearing the Minister’s response to that because it is obviously a very important issue.

Obviously, the JCVI work on the impact and cost-effectiveness of vaccinating adolescent boys is crucial, balancing the cost of the vaccination programme with the cost of treating HPV-related diseases, which is considerably more. My noble friend Lady Gould spelt out the costs involved in that. The RSPH’s call to action on extending the vaccine programme to all 12 to 13 year-old boys calls for the negotiation of a cost-effective HPV vaccine based on the Australian Government’s experience, which managed to secure a reduced cost per dosage of the vaccine for boys. My noble friend Lady Gould also referred to the changes last year in the vaccination programme for girls from three doses to two. The savings involved in that could have the potential to be invested in extending the programme to boys.

Finally, I underline the RSPH’s call for the need for a major campaign to increase public awareness of the risk of transmitting or contracting the HPV virus, and the potential impact that HPV can have on everyone. This is especially important in schools as a key part of the PSHE schools programme. Labour is strongly committed to, and in favour of, sex and relationship education being compulsory in all publicly funded schools in an age-appropriate way. The Minister will know that we tabled key amendments on this during the course of the then Children and Families Bill, but there was strong resistance from the then Education Secretary, Michael Gove. We also underlined the need to update the statutory sex and relationship guidance issued by the education department to schools, which has not been updated since 2000. In the spirit of joined-up government, I conclude by asking the Minister if the Department of Health will lead the way on this. Is it undertaking any work on this, and will he ensure that HPV awareness forms part of this work?

Elderly People: Powers of Attorney and Living Wills

Baroness Wheeler Excerpts

Monday 12th January 2015 Lords Chamber

[Baroness Wheeler (Lab)]

My Lords, I, too, congratulate my noble friend Lady Bakewell on securing this key debate. Like other noble Lords, I am a huge admirer of her campaigning work on behalf of older people, her mission to get us talking openly and frankly about the ageing process and especially about dementia—drifting into this “unknown world”, as she referred to it in her excellent Suppose I lose it? programme—and her willingness to relate and talk about her own experiences, asking the question that all of us ask ourselves as we get older about whether our memory loss or lapses are just an only-to-be-expected part of the ageing process or represent the early stages of dementia. I really liked her reference in the programme to being as busy and involved as she ever was and to the fact that, despite her fears, if dementia was looming she simply did not have the time to notice it. I hope that that is the case with us all. She is certainly right that staying alert for symptoms and confronting fears early is the best way to grow old.

My noble friend has focused on the urgent need to address end-of-life care for people with dementia and the excellent recommendations set out in the Dementia Action Alliance’s The Carers’ Call to Action. Encouraging the preparation of living wills and LPAs also applies to serious or degenerative illness and long-term conditions where, although the person is stable and may have a good quality of life for many years to come, the unknown can still be expected, such as with stroke or heart disease. Although we all agree on the need to keep hammering home the message about preparation for what is or may be to come, going down the actual route of finding out about and preparing documentation and legal forms before anything happens is something we just do not like to face or we put off.

On dementia, it is important to encourage early stage sufferers to take out advanced directives or statements, or a personal welfare LPA. However, we have to recognise that the growing problem out there relates also to finance and resources issues, with legal disputes over wills made by dementia sufferers rising sharply. In the Newcastle Journal, a recent article reported that a local firm of solicitors estimated that disputes involving cases where wills were contested as having been made by people lacking the appropriate mental capacity had risen by over 50%.

Some of those claims related to wills made by people who did not know that they were suffering from dementia at the time, or they involved people who, because of fear and stigma, did not tell the solicitor about their illness and therefore the solicitor was not able to undertake any process to try to test their mental state or capacity. Where property and assets are involved, we also need to stress the importance of good legal advice to avoid vulnerable people making wills that turn out to be invalid, and of taking out the finance and resources LPA, conferring powers for people to act on their behalf if they become incapable of doing so themselves.

As well as being costly, the process of preparing an LPA is daunting. As you get older, understanding the legal processes and documentation, as well as appointing attorneys and replacement attorneys, become more and more difficult, as your contemporaries and the people you would trust to do this are the same age as you and you fear that they may pop off before you. Children and family members undertake this role but, in the case of single people without family, it can be a real obstacle. Affordability is also a key issue for probably most of the vu1nerable people we are talking about. Many solicitors undertake this work on a fixed-fee basis, but the leader of our local carer support organisation, of which I am a trustee, recently told me that for most of the carers and cared for whom we deal with, being unable to afford the legal costs was a major issue.

Thankfully, however, the advance decision or statement process is straightforward, and I commend the excellent Age UK factsheet covering this. I wish that I had seen it when our family was experiencing the first hours of my partner’s major stroke seven years ago—or, obviously, ideally beforehand. The Alzheimer’s Society’s two-page advance decision form is also excellent. I hope that it is out there in GPs’ surgeries, hospitals and hospices so that professionals can guide patients and their families to it. There was no advice at the hospital or talk with me or our family about these issues from medical, nursing or any other staff when my partner faced a really critical 24 hours in A&E and the ICU. I hope that these processes have now much improved and that the Minister can reassure me that he is confident that that is the case.

The developments in medical science mean that more lives are now saved than ever before, but they also mean that preserving life without any real hope of a full recovery is ever more real. The advance decision and statement process recognises that competent and informed adults who are capable of understanding the implications of their decisions have an established right in common law to refuse medical procedures or treatment.

My noble friend stressed the importance of medical and social care advice and support for patients contemplating living wills and for their carers and families. It is all part of the vital communication process that needs to take place with people facing long-term or terminal illness concerning the reality of their situation and the impact of the treatment options, as well as the need for a meaningful discussion about their end-of-life wishes. The medical and nursing professions have improved considerably at having these conversations with patients, and the hospice movement has led the way on this. However, the experience of patients and carers shows that there is still much to be done to improve medical and nursing skills in this regard, and I hope that the Minister will be able to tell us how training and development issues are supporting this.

I was fortunate to be present at one of last year’s Radio 4 Reith lectures by Atul Gawande, the American physician, well known international lecturer and New York Times columnist, which led me to read his recent book, Being Mortal: Illness, Medicine and What Matters in the End. This deals with end-of-life care and how difficult it is for surgeons and other medical staff to have the “hard conversations” with patients that need to take place.

Although set in the context of the American healthcare system and focusing mainly on people with terminal illness, the case studies are of US Medicare and hospice care, so they have a strong resonance with our experience here. Dr Gawande describes pretty graphically how difficult it is for medics to discuss with patients what he calls the “larger truth” about their condition and the ultimate limits of doctors’ capabilities in treating them, let alone what matters most to patients when they face serious or degenerative illnesses or they near the end of their life. It is a very thought-provoking book and I commend it to noble Lords as it deals with the importance of trying to ensure that patients are not kept alive artificially if suffering from a terminal illness.

In a hospital in Wisconsin, over a number of years a systematic campaign took place to get medical staff and patients to discuss end-of-life wishes. This was developed into a hospital-wide standard procedure with the use of a multiple-choice form, much along the lines of our advance decision process but with a more detailed questionnaire. In time, 85% of patients who died in that hospital had a written advance directive, and doctors virtually always knew of the instructions and followed them. I quote from the book:

“This system meant that people were far more likely to have talked about what they want and what they don’t want before they and their relatives find themselves in the throes of crisis and fear. The discussion, not the list of questions, was what mattered most”.

I conclude by underlining my noble friend’s reference to the national dementia strategy, which urgently needs to be updated, and echo the calls made in her programme by Professor Rowan Harwood for it to address how we actually care for people with dementia and support the carers and care workers that care for them. His work at the Queen’s Medical Centre in Nottingham in adapting Ward B47 to meet the complex needs of patients with dementia seemed to display the understanding about care and treatment that we must aim for in the future. It also resulted in savings in hospital costs, so I look forward to the Minister’s comments on this.

NHS: Five Year Forward View

Baroness Wheeler Excerpts

Monday 1st December 2014 Lords Chamber

[Baroness Wheeler (Lab)]

My Lords, I thank the Minister for reading out the Statement. This weekend, a 16 year-old girl in need of a hospital bed was held for two days in a police cell because there was not a single bed available for her anywhere in the country. As we have warned before, this is by no means an isolated example. The BBC reported on Friday that seven other people had died recently waiting for mental health beds, and it is not just mental health. Last week, we were told of a stroke patient being ferried to hospital by police on a makeshift stretcher, made from blinds in his house, and who later died. This was one of a number of alarming reports of people waiting hours in pain and distress for ambulances to arrive.

To listen to the Statement today, you would have no idea that any of this is happening. That is the problem. Nothing the Minister has said today will address these pressures ahead of this winter. On mental health, does the Minister not accept that there is an undeniable need to open more beds urgently to stop appalling cases like the one at the weekend? What assessment has he made of the ability of the ambulance service to cope this winter and is there a case for emergency support on top of what has been announced? This Statement offers no help now to an NHS on the brink of its worst winter in years.

However, there is another major problem with the Statement. This weekend’s headlines promised £2 billion extra for the NHS but the small print revealed that it is nothing of the sort. It is interesting to note that the figure of £2 billion has not been used in the Statement today but is what the NHS is being led to believe it is getting. Will the Minister confirm that £700 million of the £1.7 billion that he talked about is not new money but already in his budget? A few weeks ago, his department told the Public Accounts Committee that it expects to overspend this year by half a billion pounds. If this is the case, would the Minister care to tell us where this £700 million is coming from and what services are being cut to pay for it? At the weekend we exposed NHS England’s plans to cut the funding for clinical trials, which would have affected thousands of very poorly patients. Is this one of the planned cuts to pay for this? Will the Minister now guarantee that funding for research and clinical trials will not be cut?

Not only is the £700 million recycled; we gather that another £1 billion will be funded from cuts to other departments. The Institute for Fiscal Studies has warned of “staggeringly big cuts” to local government in the next Parliament. The NHS Confederation has said that:

“If additional NHS funding comes at the expense of tough cuts to local government budgets, this will be a false economy as costs in the NHS will rise”.

Have the Government not learnt the lessons of this Parliament, namely that the NHS cannot be seen in isolation from other services and that cutting social care only leads to extra costs for the NHS?

Figures released on Friday revealed record numbers of older people trapped in hospital because the care was not there for them at home. This is the human consequence of the severe cuts to social care in this Parliament, and it is clear that the Government are preparing to do the same again in the next. Hospital A&Es have now missed the Government’s own target for 71 weeks running. Cancer patients are waiting longer for treatment to start. Everyone is finding it harder and harder to see a GP. Is it not the case that most of what the Government have announced will go to patching up the problems they have created, leaving less than a quarter for the new models of care outlined in the NHS Five Year Forward View? The reality is that what has been announced provides nothing for the NHS now, is not what it seems and, because of that, will not be enough to prevent the NHS tipping into full-blown crisis if the Government are re-elected next year.

It is impossible to see how the Government can find any more for the NHS than this because they have prioritised tax cuts for high earners and have not yet found the money to pay for those. That explains the desperate attempts to inflate these figures and make them sound more than they are. I ask the Minister: is it not the case that, to deliver the Five Year Forward View, the NHS needs truly additional money on the scale that Labour is proposing—an extra £2.5 billion over and above everything that he has promised today—and an ambitious plan for the full integration of health and social care?

The Government have said that they would be the Government who cut the deficit, not the NHS, but it is this Health Secretary who has created a deficit in the NHS and it is because of that deficit that cancer patients are waiting longer, A&E is in crisis and children are being held in police cells, not hospital beds. The reality is that the Statement has nothing of comfort to offer to these patients.

Finally, I want to comment on the terrible irony of the reference in the Statement to the Government rejecting the top-down reorganisation approach. The Statement says that the Government,

“have listened to people in the NHS who say that more than anything the NHS wants structural stability going forward”.

I am sure that the House would be very pleased to hear how the Government consider their £3 billion, top-down reorganisation has delivered structural stability and whether, with hindsight, the Minister can admit that the money would have been much better spent on improving patient care.

Care Sector

Baroness Wheeler Excerpts

Tuesday 25th November 2014 Lords Chamber

[Baroness Wheeler (Lab)]

My Lords, I, too, congratulate my noble friend Lady Kingsmill on her excellent report and on securing this debate. At a time when your Lordships’ House will shortly begin focusing on the regulations that will underpin the implementation of the Care Act from next April, discussing now the key role of the social care workforce in bringing about the changes that we want to see in health and social care in the future is both crucial and timely.

My noble friend’s report paints a grim picture of the low pay and working conditions of the 220,000 home care workers in England who are illegally paid below the national minimum wage, and those of residential care staff, day care and community-based staff, who together make up more than 1.3 million of the total social care workforce. This is in the context of the latest data from the Office for National Statistics, which show that in 2014 British workers overall have suffered the sixth straight year of falling real pay, taking earnings back to levels seen in the early 2000s.

My noble friend and other noble Lords have ably covered the key issues raised in the report—low pay, the terrible impact of zero-hours contracts, the impact of staff shortages and high turnover on the quality of care, and the vital importance of improving training and career pathways for social care workers. Like the noble Baroness, Lady Chisholm, I want to highlight the impact that this situation has on carers because, above all, carers need to know that their parent, child or partner are in the good hands of caring, motivated and competent care staff.

We know that, as our society ages and people live longer with complex health needs, the pressure on families to provide care and support will continue to grow. If families are able to take on these caring responsibilities, and often juggle them alongside paid work that is vital to the family budget and other family commitments, then sufficient, reliable, affordable and good-quality care services will be the linchpin that helps them hold it together. Care workers are at the heart of these services in both home and respite care. The skills, suitability, empathy and reliability of staff are at the core of good-quality care. If care is poor because care workers are undervalued, not properly trained, unreliable or stretched too far by their employers, then carers have to step in, often at the expense of their own health, their career, their relationships and their ability to cope.

If you are a carer for people with dementia, autism or mental health issues, for example, high staff turnover is a particular problem because the person you are caring for can become distressed by change or by being looked after by people they do not know. It also takes time for families to build trust with someone new. One respondent to the recent Carers UK survey reported having 22 different care workers in 12 months. As she put it, “They all have to be trained by us to care for our daughter, and it takes hours”.

As noble Lords have said, there is good-quality care out there despite the pressures, low pay and low status. I am myself a carer for a disabled adult with a long-term health condition, and our experience of domiciliary agency care is that it is of a very high standard. We know the majority of the care worker team that comes in for the week, providing essential personal care for my partner, who is paralysed down his left side following a stroke. Our experience is of having a caring service from care workers who seem to have exactly the sort of attitude, empathy and approach to clients, to disability and to me, as a carer, that we so often call for to be the norm across health and social care. Most of our care workers are women in their mid-to-late 20s—mostly a migrant workforce—and they do a great job in difficult circumstances. We have to remember that personal care—washing, dressing, safe care and dealing with continence care—is intimate care and needs respect and understanding on the part of the care worker. That is what is delivered in our case.

However, the flip-side of this, of course, is the long hours and low pay for care workers that have been highlighted today, involving conditions such as non-payment if a call is cancelled—which seems to be one of the most unfair practices since cancellation is not the care worker’s fault—and pressure to carry on from early morning to late at night if there is staff sickness or shortages and nobody else to cover. Keeping consistent staff so that carers know them, providing better training, giving staff more time to carry out tasks and paying staff more are the four most important things that carers highlight in their responses to the Carers UK survey. As one of the respondents commented:

“Employ people you’d want to look after your family and pay them for the important job it is”.

UNISON’s Time to Care report shows the staff’s frustration at not having the time to do the job they want to do, and many are providing unpaid care just to get the job done. As one contributor said:

“I’d always stay and be late for my next client or, if it was my last call, I would still stay and not get paid for it, as I could not leave someone that needed me”.

Good care that meets the needs of the person they look after can improve carers’ ability to work, spend time with their family members, look after their own health and have a life of their own outside the caring role. It means dignity, respect and a better life for the person they care for.

Medical Innovation Bill [HL]

Baroness Wheeler Excerpts

Friday 24th October 2014 Lords Chamber

[Lord Mackay of Clashfern (Con)]

My Lords, I had not intended to take much part this morning but, my name having been mentioned, I am stimulated to respond. The Bill is about innovation. Therefore, if a doctor is attacked for some failure in respect of innovation, the ordinary rules of defence that are presently available do not seem appropriate. Our colleagues who are excellent innovators have managed to avoid the necessity for litigation as a result of their innovations. However, if by any chance any of them were challenged, how would they go about their defence?

I make this basic point in answer to my colleague the noble Lord, Lord Pannick. He quoted what I said at Second Reading. It will not surprise your Lordships if I happen to hold still to what I said then. The point is that when there is an innovation, there is not much material on which to judge whether it is reasonable or proportionate. If there were in the existing practice, it would not be an innovation. The problem is therefore that the ordinary formulations of reasonable and proportionate with which lawyers are very familiar—I am enough of a lawyer to be familiar with them—are not really appropriate. I believe that the test which my noble friend Lord Saatchi’s Bill originally had, and which is preserved among all the innovations that have taken place since, is in Clause 1(4)(a):

“Nothing in this section … permits a doctor to administer treatment for the purposes of research or for any purpose other than the best interests of the patient”.

That is a simple test which the doctor must face at the time of innovation and, so far as I am concerned, elaboration with the familiar legal phrases that are very dear to lawyers is a mistake. I therefore adhere to what I said at Second Reading.

I should perhaps say that I am not entirely without experience in this area for when I was in practice in Scotland, which is now a long time ago, I did quite a lot of work in the Medical and Dental Defence Union of Scotland area. My very first appearance as a counsel in this House was in respect of a doctor’s negligence. My experience was over quite a long period; it may not have been very good but it was certainly extensive. I very much support the Bill and hope that we need not get around to voting on it today. There is plenty of scope for discussion about these matters and a good deal of substance in many of the amendments. We should discuss them further and, if necessary, have votes on Report.

[Baroness Wheeler (Lab)]

My Lords, on behalf of these Benches I welcome the commencement of the Committee stage of the Bill. At Second Reading we underlined the necessity for close scrutiny by this House, and we are pleased that the opportunity has been presented to us. In that debate there was both strong support for and strong reservations about the Bill, with many questions and issues to be addressed. We have moved on since then, but despite acknowledged progress made on safeguards for staff and patients contained in the amendments from the noble Lord, Lord Saatchi, there remain crucial reservations and concerns from key parts of the medical profession and from patients’ organisations, as we continue to discuss today.

We commend the work that the noble Lord has undertaken on the Bill, and feel that the changes on patient and staff safety signify improvements to it. It is reassuring that his proposed amendments have the backing of Sir Bruce Keogh, the NHS medical director, and the Government, and that the common-law Bolam test would remain unaffected by the Bill. The noble Lord, Lord Saatchi, knows that there is strong support for the principles and the intent of what he is trying to achieve. Labour has always strongly supported efforts to put innovation at the heart of the NHS and to bring innovative treatments to patients faster.

After Second Reading, the Minister for Health, Dr Daniel Poulter, responding to a Parliamentary Question in the Commons from Labour on the progress of the Bill, acknowledged the Government’s support for the principles of the Bill but emphasised that the amendments were necessary,

“to ensure it does not: put patients at risk; deter good and responsible innovation; place an undue bureaucratic burden on the National Health Service; or expose doctors to a risk of additional liabilities”.

These four key tests are what we should keep firmly in focus today, and I hope that the noble Lord, Lord Saatchi, and the Minister will address whether they consider that the tests have been met in the revised Bill in their responses to the issues that have been raised today.

I will limit myself to speaking on just some amendments in this group. Like other noble Lords, I look forward to hearing from the noble Lord, Lord Saatchi, and the Minister on the key issues raised by the many experts in this field who have spoken today. On patient safety, as I have stressed, we welcome the efforts made by the noble Lord, Lord Saatchi, in his amendments to address widespread concerns that the overall Bill would encourage reckless rather than responsible innovation and put patients at risk. We support the new emphasis on reasonable and responsible innovation contained in amendments in the next group, as well as the reference in Amendment 10 in this group from the noble Lord, Lord Pannick, and my noble friends Lord Turnberg and Lord Winston, to the doctor needing to act in a manner that is both reasonable and proportionate. The new provisions in Amendments 8 and 9 are important because we recognise that they are designed to provide that a doctor’s departure from the existing range of accepted medical treatment for a condition is not negligent where the decision to depart is taken responsibly.

We also welcome the deletion of the references in the previous Bill to the doctor’s responsible officer and appropriately qualified colleagues in respect of the staff to be consulted about the proposed treatment. These caused much confusion among both supporters and people with concerns about the Bill, and the new reference in Amendment 16 to the need to obtain the views of one or more appropriately qualified doctors in relation to the proposed treatment is clearer—although it is a critical area that will also need to be developed under guidelines, codes and/or regulations. It needs to be clear who is an appropriate qualified doctor. The new definition of a doctor being,

“appropriately qualified if he or she has appropriate expertise and experience in dealing with patients with the condition in question”,

is also an improvement to the Bill, although the question of the independence of the doctor whose opinion is being sought is a critical one.

My noble friend Lord Turnberg addressed this earlier with much force under Amendment 7. Key stakeholders have stressed that requiring the doctor to have regard to the opinions of other professionals responsible for patients’ care, together with the requirement for written consent to be sought from at least one other doctor who is independent of the responsible doctor, would be a welcome step in providing more clarity to the process.

There is an extremely worrying potential for conflict of interest here—for example, in the supporting doctor’s involvement in the development of the drug or treatment in question—and clear guidelines and rules of engagement will be essential. Sir Robert Francis QC points to the problem that arises from the choice of the appropriate qualified doctor to consult resting entirely with the doctor wanting to offer a new treatment. He or she is free to choose someone in his own partnership or laboratory, or someone with a commercial interest in promoting or selling the treatment. It is less than clear who is the final judge of whether the individual is appropriately qualified. There is also concern among a number of stakeholder groups that pharmaceutical companies could put undue pressure on doctors to try out potentially dangerous treatments, and this concern will also need to be addressed.

Concerns remain that the involvement and consent of patients to untested innovative treatments are not more explicitly in the Bill. Amendment 14 from the noble Baroness, Lady Masham, addresses this issue by specifying the need to obtain informed consent in light of the aims, processes and risks. I look forward to hearing further from the noble Lord, Lord Saatchi, on how he considers the Bill can address this, as this point has been raised by a number of noble Lords in the debate.

--- Later in debate ---

[Baroness Masham of Ilton]

My Lords, I support what the noble Lord, Lord Blencathra, has said. The use of drugs seems much more flexible in the private sector than in the National Health Service. I ask the Minister to look very closely at the funding of these drugs if they are to be accepted in the Bill.

[Baroness Wheeler]

My Lords, I am pleased that Amendment 28 has been grouped with the amendment of my noble friend Lord Winston and the noble Lord, Lord Pannick, as we have considerable sympathy with their attempts to define innovation. I understand that it is a probing amendment. We consider that the Bill would benefit from a clearer understanding of what we mean by innovation and indeed of some of the exclusions that would apply that were referenced in the earlier comments on Amendment 19. I am grateful to my noble friend Lord Giddens. His perspective on that was helpful. I look forward to the response on that.

Amendment 28 is also a probing amendment and underlines that medical innovation and the adoption of new treatments require the whole NHS to make both research and innovation its business. The Secretary of State, the NHS regulators and all the key NHS bodies have a clear responsibility and the authority that they need; they need to use it. We have had many debates in this House that recognise the scale and pace of innovation taking place across the NHS and the frustrating barriers that prevent innovative treatments being adopted.

The noble Lord, Lord Saatchi, considers that doctors’ fear of medical litigation or disciplinary proceedings is a key factor that,

“reinforces a culture of fear and defensive medicine in the NHS”.

Whether medical litigation evidence supports that or not, we need to keep emphasising that it is just one of a number of barriers that have to be overcome. I know that the noble Lord recognises this as the context for his Bill. As Sir Robert Francis QC puts it:

“The real obstacles to responsible innovation are not to be found in the Bolam test but in the minefield of regulation and bureaucratic inertia which doctors presumably have to surmount, not to mention the reluctance to fund innovative treatment”.

The contribution of the noble Lord, Lord Blencathra, underlines that we are far too slow in this country to introduce new treatments.

The Health Research Authority is still yet to make a real impact on speeding up the painfully slow, complex and bureaucratic process of getting innovation in care and treatment adopted in the NHS. There is huge frustration across the NHS that existing pathways and mechanisms are not being fully used, such as the single portal of entry and single application procedures for clinical trials. NHS trusts’ slow implementation of the UK life sciences strategy, Innovation, Health and Wealth, and the very low level of awareness and action that they have taken on that strategy are continuing causes for concern.

Most important too is the role of Health Education England in ensuring that innovation and research are incorporated into the education and training of key medical and other health staff. The excellent vision report from the Association of Medical Research Charities, which my noble friend Lord Turnberg takes every opportunity to raise and endorse, showed the huge challenges we face in building support among doctors and patients for participating in research that leads to innovation.

As research and innovation go hand in hand, we were keen to include reference to research and innovation in our amendment, but I hear what has been said by the noble Lord, Lord Saatchi, and the Minister on this. I note that the Medical Defence Union, while now supporting the changes the noble Lord, Lord Saatchi, has made to the Bill, also makes the point about the importance of research being included because that is where most innovation takes place. It is concerned on this issue because it feels that many doctors are likely to be uncertain about whether the Bill would apply to innovation they are contemplating. This may hold up a proposed treatment or procedure while they check the position. In most cases, the Bill will not apply. Even where innovation arises out of a research project, doctors are likely to want to ensure that information gathered in treating the patient contributes to overall research in that area, and the MDU is concerned that the wording of the Bill may prevent that. I would be grateful for comments on this point from either the noble Lord, Lord Saatchi, or the Minister.

Our amendment seeks to place the Bill in the context of the duty of the Secretary of State and the key bodies of the NHS to support responsible innovation in medical treatment and makes it clear that that is the overall purpose of the Bill. I would welcome a response from the noble Lord, Lord Saatchi, on whether, despite his desire to keep the Bill short, he considers that a clear definition of the core concept of innovation, as the noble Lord, Lord Pannick, said, could be incorporated into the Bill as a reference to its overarching purpose. I would also appreciate the Minister’s comments on this.

[Baroness O'Neill of Bengarve]

My Lords, before the noble Earl responds, I would like to know whether other noble Lords think that this attempted definition of “innovation” does not perhaps inadvertently classify some entirely traditional medical treatments as innovations simply because they have been around for much longer than randomised clinical trials with equivalent clinical validation, and there will be no published evidence of their risks and benefits in peer-reviewed medical journals. I have in mind such homely treatments as prescribing the drinking of a lot of water, taking the waters or dietary advice. Many such things seem to be medical treatments but have probably not been documented in the journals.

--- Later in debate ---

[Lord Kirkwood of Kirkhope]

Perhaps I may expand on the point I made on the first group of amendments. I am grateful for the comment from the Minister, which I understood as far as it went. I agree with what the noble Lord, Lord Turnberg, has just said. This changes how the regulator approaches a complaint, as far as I can see. It would not change the way that the regulator decides whether there is a case to answer but it seems that this clause—which I think I welcome—gives the doctor an option of which defence he uses against the allegations in front of him.

As I know from previous experience, the General Medical Council has very clear, long-established systems for determining how complaints are lodged and how fitness-to-practise procedures are put in hand. It is very carefully controlled. Do I understand that the proposed new clause in Amendment 29 would merely—if I can put it that way—give the doctor against whom the complaint was alleged the choice of one of these channels of defence in relation to any complaint made against him by the regulator? I am still not clear as to whether I understand this properly. I think I am in favour of this amendment but I am not too sure. If anybody can help me understand it better, I will be really pleased.

[Baroness Wheeler]

My Lords, we have had a very authoritative and detailed contribution on the issues raised by Amendment 29 from the noble Lord, Lord Saatchi. Opinion among noble Lords and indeed the stakeholder medical and patients’ organisations is still divided on: first, whether a change to the law is required or whether the existing law and professional ethics arrangements will allow responsible innovation; and secondly, whether the potential two options/processes—or three as my noble friend now makes it clear will be available if the Bill becomes law—will improve and speed up the administering of innovative treatments or will cause considerable confusion among doctors about which system they should use, lead to more bureaucracy and deter them from embarking on the course?

As we said earlier, we welcome the attempts of the noble Lord, Lord Saatchi, to ensure that with this amendment the Bill does not affect the common-law Bolam test. On the overall Bill he has led a powerful campaign and is reported to have won the support of patients responding to the consultation and the publicity from Cancer Research UK, Marie Curie Cancer Care and other patient organisations. I was pleased that the noble Baroness, Lady Masham, raised a number of questions from Marie Curie about palliative care and the use of drugs arising from issues in the Bill, and I was grateful for the Minister’s very helpful response.

The General Medical Council has now given its support to the amended Bill and the Medical Defence Union has said that the amendments cover the main objections to the previous Bill. However, we have to acknowledge that some key stakeholders maintain that the Bill is not necessary because the existing law already ensures protection for doctors to innovate, and the current law and ethical guidance from the General Medical Council are clear. The Royal College of Surgeons still has strong reservations about the Bill, particularly about it applying to surgery, as we have heard. The Medical Protection Society still believes that it confuses rather than clarifies the law. The Association of Personal Injury Lawyers says that the amendments make a confusing Bill even vaguer. The BMA still strongly questions the necessity and desirability of clarifying or changing the law. Action Against Medical Accidents, one of the leading patient organisations, still says that the Bill is fraught with unintended and dangerous consequences and will create a more bureaucratic system. Sir Robert Francis QC, while considering that the amendments have produced an improvement in safeguards over what was originally proposed, has said that serious problems remain. In particular, he is concerned, as my noble friend Lord Turnberg pointed out earlier, that the Bolam amendment, while restoring a level of safeguard, also has the disadvantage of restating Bolam in different language, leading to a real risk of confusion. His question is: why not just stick to Bolam? I would be grateful for the noble Lord’s comments on that.

Will the noble Lord, Lord Saatchi, and the Minister tell the Committee whether they consider that the amended Bill now meets Dr Dan Poulter’s key test that I referred to earlier; namely, of not placing an undue bureaucratic burden on the NHS or not exposing doctors to a risk of additional liabilities?

I welcome the response of the noble Lord, Lord Saatchi, on the question of convening a round table, which I think will be a very helpful way of going forward. Obviously, it will never be possible to satisfy everybody’s concerns but, if the Bill is to be further supported, what steps will be taken by the Government to engage with stakeholder concerns?

[Earl Howe]

My Lords, the Government support these two amendments, which ensure that the Bolam test will remain unaffected by the Bill. In practice, this will mean that it is for the innovating doctor to decide whether to take the steps set out under the Bill or to rely on the existing Bolam test. In other words, there would be no requirement for doctors to follow the Bill when innovating.

The amendments clarify that, separate to the existing Bolam test which is applied by the courts, the Bill provides doctors with an alternative option for showing that they are acting or have acted responsibly. Furthermore, subsection (2)(b) of the proposed new clause provides that doctors are not negligent, and thus will not be judged adversely if their actions are later challenged, merely because they have not followed the Bill.

My noble friend Lord Kirkwood asked how the proposed new clause affects how a regulator approaches a complaint or fitness-to-practise procedures. This Bill addresses clinical negligence law and how the courts will assess these cases, not how the regulators will process fitness-to-practise cases.

The noble Baroness, Lady Wheeler, asked whether the Bill was necessary. The Department of Health’s consultation on the Bill revealed that some doctors find the threat of litigation to be a block to innovation, although this view was not universally held. The Bill is aimed at reassuring those doctors who feel unable to innovate due to concerns about litigation. There will also be many doctors who are not afraid to innovate and for whom litigation is not a material concern. Those doctors can continue to act as they have done previously and rely on the existing law of clinical negligence, or, as I have explained, they may choose to take advantage of the Bill instead.

I hope that noble Lords will accept these two amendments, which give flexibility and choice to doctors who want to innovate.

Children: Obesity

Baroness Wheeler Excerpts

Monday 20th October 2014 Lords Chamber

[Earl Howe]

My Lords, our current emphasis is on overall calorie reduction, of which sugar forms an important part. The scope for reformulation to reduce sugar levels varies widely depending on the food that one considers and a reduction of sugar levels does not always mean that the overall calorie content is reduced. The issue is not black and white. An example of that is when sugar is replaced by starch or other ingredients. Nevertheless, we are discussing with the food manufacturing industry ways in which it can reformulate its food and the Scientific Advisory Committee on Nutrition is finalising its review on carbohydrates, looking at sugar as a particular component of that.

[Baroness Wheeler (Lab)]

My Lords, given the difficulty of ensuring effective cross-department co-ordination on childhood obesity, what is the Government’s response to a call by the Royal College of General Practitioners to set up a COBRA-style task force? Would that not be a key way of ensuring a joined-up approach that extended beyond the Department of Health?

[Earl Howe]

My Lords, as I mentioned earlier, we have set up the Obesity Review Group, which contains a multiplicity of experts to co-ordinate the efforts being conducted not only in government but also in local government and on the part of business and the wider private sector. While I buy into the central point made by the noble Baroness that this needs an overarching scrutiny, we believe that we have that already.

Health: Stroke

Baroness Wheeler Excerpts

Wednesday 23rd July 2014 Grand Committee

Asked by

[Baroness Wheeler]

To ask Her Majesty’s Government what action they are taking to support children and young people who have had a stroke.

[Baroness Wheeler (Lab)]

My Lords, most of us, even if we have had first-hand experience of a family member or friend who has had a stroke, think of it as associated with older people. Indeed, when my partner, who was then 62 years old, had a major stroke nearly seven years ago, I was a bit surprised to see two patients on the stroke ward and in the physio room in their 20s and mid-30s who had had major strokes, suffering from effects just as debilitating as for an older person but, of course, with even longer-term impact.

However, later, as a member of the All-Party Parliamentary Group on Stroke, I met the amazing Eliza Cooke, a 16 year-old ambassador for the Stroke Association, who has played a very important role in developing its key campaign to build awareness of child stroke, which has inspired the debate today. Eliza, who is here today, had a mild stroke aged 10 when she was on holiday in France, where an MRI brain scan, had it been available, could possibly have prevented the major stroke she suffered 10 days later on arriving back home. She had the classic symptoms of right-hand brain stroke but, here in Britain, she did not have the MRI scan straight away, because the health professionals she came into contact with were just not sufficiently aware that children have strokes.

By the time Eliza was referred to Great Ormond Street Hospital, 24 hours later, it was too late for surgery. She was completely paralysed down her left side and her brain was seriously injured. Eliza was an in-patient at the London Hospital for four months and had good physiotherapy, there relearning to walk, but she never regained the functioning of her left hand and has a weak left arm and leg, causing her to limp. School and study have been challenging because her memory was also affected, as was her ability to process things visually. However, she is an inspirational and determined girl and, and out of all that, is now doing her AS-levels—and, moreover, wants to study politics at university.

Eliza still has physio and occupational therapy, which she needs to ensure that she retains the movement that she has, but, like other young adults with disabilities, the key question and uncertainty for her is always: will the therapy continue when I am 18?

That children have strokes is the key message from the Stroke Association’s campaign. Awareness and recognition of the possible symptoms among health professionals and the public are vital so that, as with adult stroke, care and treatment can be fast and commence as soon as diagnosis is made. Children with suspected stroke should be seen by a consultant paediatric neurologist, paediatrician or neurosurgeon and have fast access to an MRI brain scan to determine whether it is a stroke and, if so, what type of stroke it is. Late diagnosis is a major problem with childhood stroke, and failure to get the right treatment can have a devastating impact on children and their families for the rest of their lives.

Childhood stroke is, thankfully, relatively rare. It has been estimated that about 400 children and young people in the UK have a stroke each year, and stroke is one of the top 10 causes of death in childhood. Indeed, reliable top estimates suggest that as many as 1,500 children a year could be affected by stroke.

The long-term outcomes of paediatric stroke are difficult to predict. More than half of children will be left with significant long-term disabilities after stroke—some well known, such as one-sided paralysis or weakness, or problems with speech and communication, but others less known, such as difficulties of perception and awareness and psychological and emotional changes.

The causes of childhood stroke are different from those in adults, more varied and often unknown, which is why early diagnosis can be so difficult. Those strokes occur as a result of a very diverse range of conditions—most commonly, congenital heart disease and sickle cell disease. Other underlying causes are infectious diseases, moyamoya syndrome, vasculitis and blood disorders. Childhood infections such as chicken pox, encephalitis and sepsis can also be linked to stroke in children and young people. Fear of the stroke recurring is a major concern for children and families. Ischaemic stroke, caused by a clot, recurs in between 6% and 20% of all children and in more than 60% of children with sickle cell disease.

Since tabling this debate, I have met a number of parents with their children who have suffered a stroke—Eliza and her mum, Liz, and Renee and her son Ollie, who had two strokes aged 13 and 14, are here today—all involved in the raising awareness campaign. I also want to mention eight year-old Caitlin McLaughlin, who had a stroke before she was born and now has a number of different conditions, including cerebral palsy, epilepsy and severe visual impairment. Caitlin’s 13 year- old big sister Cheyenne won the carer’s award at the Stroke Association’s recent Life after Stroke awards, for her commitment and dedication to helping to care for her sister and providing her with personal, physical and emotional support.

Sarah Scott was the deserving winner of the volunteering award. Now 23, she had a stroke while in the sixth-form class at school, at the age of 18. It resulted in right-side paralysis, from which she gradually recovered, but she was left with severe aphasia, affecting her speech, reading and writing skills. As we know, aphasia causes social isolation, particularly for someone of Sarah’s age, but she has benefited greatly from NHS speech therapy, which helped prepare her for working part-time in a local school. She has also set up a support group for young adults in her home city, and organises all their activities and outings as well as visiting other stroke survivors to provide support.

These are the inspirational stories on which I wanted to focus today, to reinforce the need for concerted action on child stroke to match the huge improvements we have seen in adult stroke care and support over the past decade. Three things need to happen. The lack of awareness of childhood stroke, its symptoms and impact—which contributes to the problem of late diagnosis—needs to be addressed; there needs to be more research into its causes, treatment and longer-term effects; and there needs to be a particular focus on improving specialist rehabilitation and longer-term services, as well as the provision of information and support for survivors and their families.

The Stroke Association and other excellent charities in this field, such as Different Strokes, Sickle Cell and Young Stroke Survivors and HemiHelp, have done tremendous work campaigning for action to raise awareness and to support parents and families. Different Strokes, for example, worked closely with the producers of the TV programme “Waterloo Road” on its recent storyline about a 14 year-old boy who had a stroke at school. When Sarah Scott had her stroke in the classroom at school, her classmates recognised the signs from the national Act FAST television adverts about strokes in adults, so an ambulance was called urgently.

Action to raise awareness needs to be taken nationally by the Government as part of an integrated strategy for childhood stroke. Does the Minister agree that plans should be put in place to build on the successful Act FAST campaign on adult stroke to raise public and professional awareness? The action of Sarah’s classmates showed how the campaign could have a very positive impact on young people. Does the Minister agree that a national strategy for childhood stroke needs to be urgently developed and fully integrated into the national cardiovascular disease outcomes strategy, which currently does not address this area? What action will the Government take to rectify this?

On awareness among health professionals, the parents I have talked to say they are often taken aback by the fact that so many doctors have not heard of childhood stroke, let alone nurses and paramedics. A recent study by Bristol University of children in the UK with ischaemic stroke found significant delays in the time from symptom onset to diagnosis, finding that diagnosis took longer than 24 hours in 51% of cases. Better implementation of national and international guidelines around the diagnosis, treatment and long-term management of childhood stroke is crucial here. What action are the Government taking to address this? What support will they give to the Royal College of Physicians, the Royal College of Paediatrics and Child Health and stroke organisations to develop new guidelines to replace the RCP’s 2004 document, which is now 10 years old? Does the Minister agree that bringing together the latest research and the views of children, families and health professionals in this way to develop new guidelines would be a major step forward in helping to address the cases of late diagnosis and misdiagnosis?

It is all-important for teachers and other schools staff to be aware of stroke symptoms and the need for rapid response, especially for children with sickle cell anaemia. They need to be part of a multiagency team which is involved in the return to school reintegration plan, and in the development of special needs education statements to allow the child to participate in school as fully as possible. Regarding research, there is widespread recognition that the best medical and rehabilitative treatment options in childhood stroke are significantly under-researched. I know other noble Lords will be addressing this, particularly the noble Lord, Lord Patel, whose experience and insights on the key issues and what needs to be done will be invaluable.

Finally, I turn to rehabilitation. Many parents of children who have had a stroke say they have to fight for their child to receive the care and treatment they should be getting. This is particularly the case for the frequency and intensity of contact with therapists, and delays in access to physio and occupational therapy. Of course, there are hospitals which do brilliant work in this area, such as the multidisciplinary child stroke services at the Evelina London Children’s Hospital at Guy’s and St Thomas’ NHS Foundation Trust, and Great Ormond Street Hospital.

I recently sat in on a session at the Evelina with a three year-old girl who had suffered a stroke when she was nine months old, and her parents. The session was led by Dr Anne Gordon, the consultant paediatric occupational therapist, who is also here today. As a carer of a stroke survivor I do not need convincing about the importance and necessity of physio and occupational therapy, but watching specialist child stroke therapy in action underlines this.

The little girl had left-side paralysis and, although she could walk, she just was not aware of her left arm. Why should she be when she had never used it? So Dr Gordon was working and playing with her and the parents, encouraging her to move her shoulder and learn to see the arm as a tool that she might use to tuck things under or generally to assist her. It was a process of joint working with the child, the therapist and the parents, and fully involving the parents so that they could continue the physio exercises with her at home. Childhood stroke impacts the whole family including parents, siblings and grandparents. Health, social and education services need to work together to provide the multidisciplinary assessments and support that the child and their family need.

Finally, the Evelina has a dedicated childhood stroke co-ordinator, who provides direct support and information to children and their families while in hospital, during the transition from hospital to home and over the longer term, by helping the child receiving rehabilitation or with starting or returning to school. The co-ordinator works closely with health professionals and uses the parent carer networks to help them reach out and support each other. Sadly that is a one-off, made possible by three-year funding from a Stroke Association corporate sponsor. How does the Minister consider that such services can be sustained and made more widely available to childhood stroke survivors and their families?

There is so much to say, and I have run out of time, but I am confident that the noble Lords who are due to speak will flesh out and expand on the many issues I have raised. I thank them all for coming to speak in this important debate today.