Health and Social Care Bill

Baroness Masham of Ilton Excerpts

Thursday 15th December 2011 Lords Chamber

[Baroness Massey of Darwen]

My Lords, I shall speak also to Amendments 311 and 320. This group of amendments seeks to ensure that the voice of the child is heard in health matters. Too often in Bills that do not relate specifically to children and young people, they are marginalised, yet, as has been said before in debates, child health is a vital aspect of healthcare and children are patients, just like adults. They have opinions just like adults and, in my experience, consulting children about what works for them always results in improved services and policies.

These amendments seek to ensure that HealthWatch England’s functions are clear and explicit in relation to children as well as to others and that its functions in providing advice to the Secretary of State, the NHS Commissioning Board and monitoring authorities on the views of patients and members of the public refer to the views of children, who are patients and members of the public.

Local healthwatch functions must also promote and support patient and public involvement in the commissioning, provision and scrutiny of local care services and must obtain the views of patients and the public about people’s needs for and experience of local care services. I submit that those functions must be carried out to include children. HealthWatch England must provide support and assistance to local HealthWatch organisations in relation to this.

Furthermore, as noble Lords may know, Article 12 of the UN Convention on the Rights of the Child makes clear that children have a right to be heard on issues that affect them. Measures to promote patient and public involvement in decisions about their own care and in the development of health services and care services must include children from the start. I believe that this will make for better health services.

The Bill does not make this clear enough. Research commissioned by the NCB has found that local involvement networks or LINks, which the Bill will transform into local healthwatch, are not always clear that children and young people are part of their remit. Local healthwatch and HealthWatch England will need to be able to identify capacity and maintain the skills to reach out to and engage children, including the most vulnerable children and their families.

A recent review of law, policy and practice in relation to children’s participation in the NHS and other public services and settings found that, in their efforts to support user involvement, the health authorities and NHS trusts had not specifically identified children as service users. The review also found that although 41 per cent of GP practices reported to have a patient participation group there was no evidence of children’s active engagement in these forums. The Royal College of Paediatrics and Child Health has argued that reforms have been lacking in providing the structures and frameworks where children and young people are properly represented. And concerns about children’s involvement in patient and public voice mechanisms were also reflected in the report of the NHS Future Forum. In 2009-10 Professor Sir Ian Kennedy carried out a review of how the NHS delivers to children and recommended a local partnership in each local authority that would co-ordinate public services in the best interests of children. His ambition was that,

“the welfare and well-being of children and young people, seen as so important by so many, will be the prevailing cultural approach”.

My amendments here try to make clear that children are within the remit of local HealthWatch and HealthWatch England and that children’s and young people’s views should be heard. I beg to move.

[Baroness Masham of Ilton]

My Lords, I support these very important amendments. One only has to remember the tragedy of Baby P and all those vulnerable children who sometimes fall between the police, the social services and the health departments.

[Baroness Finlay of Llandaff]

I put my name to these amendments, which are incredibly important. I hope that the Government’s response will be that they are listening and prepared to change this. It is worth noting that the Government’s response to Professor Sir Ian Kennedy’s report said:

“In the past, the NHS was not always set up to put the needs of patients and the public first. Too often patients were expected to fit around services rather than services around patients. Nowhere was this more the case than for children, young people and their families … If we are to meet the needs of children, young people, families and carers, it is vital that we listen to them in designing services, gather information on their experiences and priorities, provide them with the accessible information that they need to make choices about their care, and involve them in decision making”.

That is the Government’s own response to the report.

I also draw attention to the report from the ombudsman in Wales. I know we are going to debate ombudsmen later but I will make this one point. The ombudsman upheld a complaint that Health Inspection Wales,

“failed to seek the child’s perspective on her care”.

The Royal College of Paediatrics and Child Health is very concerned that “no decision about me without me” must extend to children and should involve both children and young people. Without that we will have poorer service planning and, as a result of that, poorer health outcomes. A voice for children and young people needs to be incorporated in the decision-making process of the NHS Commissioning Board, health and well-being boards and clinical commissioning groups, and a safe conduit for this involvement may be HealthWatch and local healthwatch.

I want to briefly draw the House’s attention to the fact that we have many young carers so it is not only children as patients that we need to consider. In the 2001 census it was found that there were 175,000 young carers and no one is disputing that those numbers have gone up significantly since then. A third of those are caring for somebody with mental health problems and the average age of young carers is 12 years old. Reading their comments, society clearly does not understand the pressures that they are under. There is evidence that when they get to school late, the school does not understand. When they try to accompany their parent to out-patient or even in-patient appointments, they are not listened to even though they have been providing all the care. The facilities where their relative is looked after are not appropriate for them to stay overnight. I remind the Committee that when a young parent is dying, the children will want to stay at the bedside. They may want to sleep in the same room. They do not want to be taken away. They may want to have a break; they may want to go out; they may want to watch a video. If we are really going to invest in quality of care and health outcomes for the next generation, and meet the Marmot review’s requirement for health inequalities not to be widened but narrowed, we must address the needs of this group in our population who provide a lot of care, who are incredibly important and who will be the citizens of the future, but to whom the system does not currently give a voice. To expect adults to be a voice for them is completely unrealistic, because, when they are a young carer, there is no other adult there apart from the person whom they are caring for.

I hope that these amendments will not be dismissed with a whole lot of reasons as to why they cannot be put into practice. If we are really committed to changing healthcare services for the population, we should listen to the voice of children and young people.

--- Later in debate ---

[Viscount Tenby]

My Lords, very briefly, I support the amendment in the name of my noble friend Lord Rix. He has clearly outlined the rationale behind the amendment; accordingly, I do not intend to keep the House long—sighs of relief all round, I should think—although, like my noble friend, I should declare an interest. Until last Wednesday, I was chairman of a residential home for those with learning disabilities.

I think we are aware that the complaints process against the NHS can be extremely complex and challenging for those involved. That nearly always coincides with a period of some personal distress. Indeed, the very inclusion of Clause 182 indicates that the Government, to their great credit, are aware of that factor. However, there is a danger that the provision is not sufficiently explicit. My noble friend has highlighted the potential for advocacy support to stop before a conclusion has been reached. I share his concern, and add that the amendment safeguards against the freedom given to a local authority to define what it deems to be “appropriate arrangements” for the provision of independent advocacy services.

The critical point is that, at a time when local authority budgets are particularly stretched, to expect them to provide additional resources for advocacy support could result in the needs of people being sacrificed in favour of councils balancing their books. We all understand that that goes on. In other words, the level of advocacy support offered might be dictated by available funds and, accordingly, “appropriate arrangements” might be taken as being what is appropriate for the council to offer.

That detracts from what I assume is the object of making advocacy support available: to benefit the individual. The ability for people—often in mourning and in some distress—to seek justice should surely seek precedence over what is convenient to the local authority. By explicitly removing any upper limit on the length and type of advocacy, the amendment sends a strong message to councils that the individual must be the priority in this situation. It removes the excuse that a council might have not to provide the adequate level of advocacy support required by those who need it; and instead gives the individual the power to challenge any decision they feel is unjust on the basis that their advocacy needs are greater than the support proposed.

[Baroness Masham of Ilton]

My Lords, I shall add just a few words. If we do not get this matter right, we, the Members of the House of Lords, will be blamed. I hope that Ministers will act on what has been said this evening.

[Baroness Wheeler]

My Lords, noble Lords have spoken to their amendments effectively and comprehensively, so I will not deal with all the amendments. I start by giving our support to the spirit behind Amendment 318BA, tabled by my noble friend Lord Whitty and the noble Lord, Lord Low, and Amendment 322, tabled by my noble friends Lord Rooker and Lord Harris. They underline the crucial need to uphold the independence of local healthwatch organisations by enabling them to carry out their activities as they see fit, subject to any directions from Healthwatch England, and emphasise that they must not be regarded as either servants or agents of the local authority.

Local independence is vital for people to have trust and confidence in their local healthwatch organisations to articulate their priorities and the needs of the local community. To be effective, they must be able to scrutinise how consortia and health and well-being boards have undertaken public engagement and transparency, and how they are ensuring that the patient voice is embedded in the care pathway design. They also need to be able to scrutinise how lay representatives on consortia and health and well-being boards themselves undertake public engagement and transparency.

Amendment 318E in the name of the noble Baroness, Lady Cumberlege, would require local healthwatch organisations to provide the NHS Commissioning Board with their opinion on whether local plans take proper account of their views, as evidence in reports and recommendations. We support this, and of course underline that CCGs must also be required to consult local healthwatch organisations while commissioning plans are drawn up and developed.

On the question of how local healthwatch organisations are funded, we need to recognise the widespread concern raised by noble Lords and current LINks organisations that the arrangements for local healthwatch organisations and their dependence on funding from local authorities compromise their independence, particularly in terms of public perception and confidence in their role and work. With local authorities having greater involvement in healthcare—particularly public health—how will healthwatch organisations be able to exercise the independence that the public would expect?

A number of amendments seek to address that issue, either through guaranteeing resources or prescribing how the local authority should take decisions in relation to its commissioning of healthwatch, the allocation of resources and the governance arrangements. Perversely, some of them could have the unintentional consequence of tying in local healthwatch groups to the local authority more tightly. In view of the current economic climate and the massive cuts that local authorities are having to make, the concerns and unease over the future resourcing of local healthwatch organisations need to be addressed. I hope that the Minister will recognise this as a major issue, consult all stakeholders and come back to us on Report with reassurances and solutions.

This is the first time we have touched on the new independent advocacy services that local authorities will be required to establish to provide assistance to individuals making complaints about health or community care services or providers, including using the local healthwatch organisation to deliver this service. We are very sympathetic to Amendment 324 from the noble Lords, Lord Rix and Lord Wigley, and the noble Viscount, Lord Tenby. It seeks to prevent any case being dismissed from the outset or midway through as too complex or lengthy. Complaints against the health service are often complex and require long periods of support to be provided to the complainant. It is a service that should be provided to all users, and provision will need to be made to support people with mental health problems and learning difficulties, as well as people with disabilities.

We support Amendment 325 in the names of my noble friends Lord Rooker and Lord Harris. This would provide for advocacy to cover complaints about both health and social care. I look forward to the Minister’s response on these issues.