Care Bill [HL]

Baroness Wilkins Excerpts
Tuesday 21st May 2013

(11 years, 1 month ago)

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Baroness Wilkins Portrait Baroness Wilkins
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My Lords, as so many noble Lords have said, making the points that I wanted to make, this is potentially a very important piece of legislation. I warmly welcome it. The well-being principle set out in Clause 1 is particularly welcome and the Government are to be congratulated on acting on so many of the Joint Committee's recommendations for strengthening the Bill. But unless this Bill is properly funded, its aspirational principle and welcome structure will just rub salt into the wound of the current crisis in social care. The Bill must be properly funded and other government departments must work in concert with this legislation if the social care crisis is to be alleviated.

The media debate around the Bill has largely focused on the care needs and the funding of that care for older people. I want to concentrate on the social care needs of working-age disabled people who comprise one-third of social care users. I will focus particularly on funding and housing.

Current government action on these two issues does not bode well. As we know, the fine aspiration set out in the well-being principle is cloaking a grim reality. This is particularly the case for the more than 20,000 most severely disabled people who, until it was closed to new applicants in 2010, were funded by the independent living fund to live ordinary lives in their own homes.

When I became disabled in the mid-60s, these were the people who, unless their families had sufficient money and suitable housing, were warehoused in residential care with no hope of living any sort of normal life. In the decades since, as we heard from my noble friend Lady Campbell, we have witnessed the liberation of this group to live fully integrated lives as part of the community. Some have been enabled to work and make considerable contributions to our society only because the ILF has provided top-up funding to the support available from local authorities.

But despite the fine words of Clause 1, these ILF users fear that current government action is threatening to return them to institutional care. ILF funding is ending and these people are being transferred to the local authority system in 2015. Their fears are not exaggerated and have been confirmed by the directors of social services, the Local Government Association and the Government's own impact assessment as well as the National Association of Financial Assessment Officers who have said that some councils will decide that residential care is a less expensive option than supporting people to live at home.

A few weeks ago, a group of ILF users took this decision to judicial review. It lost, but during the two-day hearing, it became clear that transition funding to protect current ILF users is available only for one year, 2015-16, and that neither the DWP nor the noble Earl’s own Department of Health want to take responsibility for making the case to the Treasury for further funding in the spending review.

What steps will the Department of Health and the DWP jointly take to ensure that funding is available after 2015? Will the Minister assure the House that ILF users will not be forced into residential care or confined within their own home with only ‘life and limb’ care following the transfer of funding responsibilities to local authorities? If this Care Bill is to fulfil its principle of well-being, what level of funding do the Government believe is necessary to ensure that we do not return to the days when disabled people with high support needs had no opportunity to live independently? If there is no time to answer at the end of the debate, would the Minister be so kind as to write to me?

The justified fears of ILF users serve only to highlight the current crisis in adult social care which is failing to support disabled people to do the basic things in life—basic needs such as washing, dressing and getting out of the house. I will not repeat the points that other noble Lords made so eloquently. However, as the Care and Support Alliance has emphasised, this Care Bill will fail to improve the social care system for disabled people if the welcome proposal of a national eligibility threshold is set too high. The White Paper's suggested threshold of “substantial” is too high. For the ambitions of Clause 1 of the Bill to be realised—that social care should enable participation in work, education and society—it is essential that the eligibility threshold should support that ambition, not demolish it.

It is vital that the national threshold is set at no more than “moderate” to ensure that prevention is at the heart of the social care system. Prevention must lie at the heart of this Bill. It will also depend on other government departments and other local authority services playing their full parts to ensure that social care expenditure does not escalate in an unintended way.

One of the most important factors in prevention is housing; both the provision of suitable housing and the aids and adaptation service. Countless stories of people being unable to return to their own homes after serious illness or accident because of inaccessibility are heartbreaking. They also result in costs occurring elsewhere in the system because of delayed discharge from hospital or expensive residential care. Simple adaptations to a person’s home can prevent the need for costly care, whether it is the provision of ramps and handrails, lever taps or a downstairs bathroom when stairs become insuperable.

This applies equally to the need for supported housing especially for people with learning disabilities. Frequently, local authorities do not even seem aware of their legal responsibility to house this group. I congratulate the Government on having listened to the Joint Committee on the draft Bill and including the suitability of a person’s home in the definition of well-being in Clause 1. During the passage of this legislation, I will seek to ensure that housing also appears on the face of the Bill in other relevant clauses so that it cannot be forgotten.

Finally, it seems like a forlorn hope that the Chancellor will recognise the urgent need to build the thousands of homes needed for social housing. They are particularly needed by disabled people who are more dependent on social housing than the rest of the population. Instead, the Chancellor spends our scarce resources on his help-to-buy scheme, which can only lead to yet another catastrophic housing bubble.

I wish the noble Earl the eloquence of angels in persuading his fellow government Ministers that they must all play their part if this Bill is going to result in more than just fine words and aspirations, particularly the Chancellor of the Exchequer.

NHS: West London Hospitals

Baroness Wilkins Excerpts
Thursday 28th February 2013

(11 years, 4 months ago)

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Earl Howe Portrait Earl Howe
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Five out of the six clinical commissioning groups involved in that area were supportive of the changes. It is true that Lewisham CCG was not. However, the four tests were looked at and it was clearly determined by the trust’s special administrator that those tests had been met.

Baroness Wilkins Portrait Baroness Wilkins
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My Lords, will the Minister recognise that parking needs of both visitors and patients need to be fully taken into account when making this sort of decision? I declare an interest as being an only-too-frequent visitor to Charing Cross A&E over the last year. It would have been impossible to get to Chelsea and Westminster hospital where the parking is appalling, both for myself and for my visitors.

Earl Howe Portrait Earl Howe
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I agree with the noble Baroness that this is most certainly a factor. In the case of north-west London, an independent equalities impact assessment was undertaken to check how the proposed options would affect all strata of local population under the Equality Act in particular. The assessment found that the impact on travel times by car, and indeed by blue light ambulance, would be minimal under all three of the options that were being looked at. The point that I am making is that in any context, it is important to factor in the effect on travel for all patients likely to be affected.

Health: Hearing Loss

Baroness Wilkins Excerpts
Monday 17th December 2012

(11 years, 6 months ago)

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Asked by
Baroness Wilkins Portrait Baroness Wilkins
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To ask Her Majesty’s Government what plans they have to introduce a screening programme for hearing loss for those over the age of 65.

Earl Howe Portrait The Parliamentary Under-Secretary of State, Department of Health (Earl Howe)
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My Lords, the United Kingdom National Screening Committee, UKNSC, advises Ministers and the National Health Service in all four United Kingdom countries about all aspects of screening policy. The UKNSC reviewed the evidence for screening for adult hearing loss in 2009 and recommended that there was currently insufficient evidence to warrant a screening programme. In line with its three-yearly review policy, the UKNSC is currently reviewing the evidence for screening for adult hearing loss.

Baroness Wilkins Portrait Baroness Wilkins
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I thank the Minister for that reply. He will be aware of the huge level of undiagnosed hearing loss in the UK and the impact this can have on other conditions. It is estimated that at least 4 million people who need a hearing aid do not have one. Not only does unaddressed hearing loss increase social isolation and depression, but there is increasing evidence that there is a link to dementia. People with mild hearing loss have nearly double the chance of developing dementia. Given that there is an average 10-year delay between someone identifying that they have a problem and seeking help, will the Government take early action to ensure that hearing loss is addressed early by introducing a screening programme?

Earl Howe Portrait Earl Howe
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My Lords, the noble Baroness’s comments relating to the features that can often accompany hearing loss, such as depression and other forms of mental illness, are absolutely to the point and I recognise all that she said in that area. The national screening committee had a number of reasons for feeling that a universal screening programme would not be appropriate. First, it was not clear to it what the test should be. Secondly, it was unclear about what agreed time or schedule there should be for doing the testing. Thirdly, it felt that if there were a realistic proposal for screening, there should be randomised trials of screening beforehand. However, it is reviewing its decision of three years ago and we will have to await the results of that.

Social Care

Baroness Wilkins Excerpts
Thursday 29th November 2012

(11 years, 7 months ago)

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Baroness Wilkins Portrait Baroness Wilkins
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My Lords, I, too, warmly congratulate my noble friend Lady Pitkeathley on obtaining this debate. Most especially, I applaud her for highlighting the significant role which housing plays in this debate. The impact which the lack of housing—poor, inaccessible and unsafe homes—have on our health and social care is too often ignored. It is rarely even mentioned, but cuts in the housing budget impact significantly on increasing expenditure on health and social care. I thank Sue Adams of Care and Repair England for her advice and help.

The crisis in housing means that, at last, it is moving up the political agenda. The Government have set out plans for a £220 care and support specialised housing fund to encourage providers to develop new accommodation options for older and disabled people. That is very welcome, but it comes in response to a severe housing shortage and a scandalous lack of new homes being built. In the past year, new home starts fell by 9%. Building new homes takes time. In the mean time, the Government’s benefit and housing policies are greatly exacerbating the problem, creating what many people have termed a perfect storm. The benefit cap, the bedroom tax and the removal of permanent tenancies and succession rights will all serve to increase the ill health of those affected and impact particularly severely on disabled and older people, multiplying the pressures on the health and social care services.

In 2006, a PSSRU discussion paper pointed out that, if we do nothing to change the current housing situation, occupied places in care homes and hospitals would need to rise by 151% by 2051. Some estimate long-term care expenditure will rise by around 325% in real terms by 2041. With such a depressing prospect, let us not waste this crisis but seize the opportunity to put effective reforms in place.

The Papworth Trust published a timely report this month based on a survey of 640 disabled and older people. It clearly demonstrates the cost to our health and social care budgets of not addressing the problems with housing. The trust’s research found that almost one in four people could not get around their home safely and two in five said that the design of their home meant that they needed help to do everyday things, such as cooking—all increasing their dependence on other people and potential costs to the health and social care budgets. The great majority of those people did not require rehousing, with the cost and upheaval that that entails, but the provision of relatively simple adaptations, such as grab rails, more accessible shelves and cupboards or level-access showers.

There is ample evidence that spending on those relatively simple adaptations to people’s homes can produce major savings to the health and social care budgets. A study published this year by the London School of Economics suggests that the annual spend of about £270 million on disabled facilities grants is worth up to £560 million in health and social care savings and quality-of-life gains. In other words, for every pound spent on DFGs, two pounds is saved on health and social care costs. A fractured hip can cost the state an estimated £28,000, so £30 on a grab rail is quite good value for money. Falls by older people cost more than £1 billion a year in the UK. The Welsh Government have estimated that a programme to help older people to remain living independently in their own homes has saved the NHS and social care budgets more than £101 million since it was set up 10 years ago.

Local authorities administer the home adaptation services, so cuts to local authority budgets are impacting on an already inadequate, overstretched and underfunded service. The service consists of two main elements: disabled facilities grants, which provided finance; and home improvement agencies, providing help and advice. For many years, there have been calls to strengthen the system and address its many problems.

A survey of English local authorities published in August this year by the Labour Party through freedom of information requests found that 17% fewer grant applications were approved in the past two years. That means that an estimated 10,700 fewer people received funding for home adaptations in 2011-12 than in 2009-10. Over the past two years, there has been a 31% increase in the number of delayed discharges from hospitals due to lack of appropriate home adaptations. That is costing the NHS £985,000 a month.

Despite a welcome extra £20 million provided by the Government for DFGs in January 2011, the money is not ring-fenced, with the result that some local authorities have used the extra funding to reduce their contribution rather than to fund extra work. The trust’s report of October this year found that, of the 326 local authorities which receive DFG funding from the Government, 62 have stopped providing Home Improvement Agency services altogether. That figure has doubled since June 2010.

The Papworth report recommends a radical overhaul of the DFG system. It sees it as wrong that responsibility for home adaptation lies solely with district councils, and proposes that local government and health money is pooled together in a DFG pot to be administered by the new health and well-being boards and clinical commissioning groups.

Finally, anyone who heard yesterday the devastating account of the research done into the situation of spinal-cord injured people in care homes, recently published by ASPIRE, could not fail to acknowledge the crucial role which housing plays in reducing the health and social care budgets. Following successful rehabilitation in a spinal injuries centre, the scandalous lack of accessible housing results in 20% of those patients being discharged by their local authorities into an elderly care home, with an average stay of two years. Twenty-five per cent of those people had tried to kill themselves. ASPIRE has made repeated requests to meet the housing Minister, with no success to date. I ask the noble Earl to do all he can to facilitate that meeting.

In conclusion, there is no denying that we are in a crisis, but let us not waste the opportunity that this crisis offers to make sure that we put in place the essential reforms needed, just as Beveridge did in the Second World War.

Health and Social Care Bill

Baroness Wilkins Excerpts
Monday 19th December 2011

(12 years, 6 months ago)

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Earlier in the Committee we moved a couple of amendments that were aimed at strengthening health and well-being boards’ and clinical commissioning groups’ thoughts around children, so I really welcome the amendment of the noble Baroness, Lady Massey. I would be grateful if my noble friend the Minister could give the Committee some clarity on democratic representation—adding councillors to health and well-being boards, but also ensuring that there is explicit district council representation on the board—and on the involvement of planning departments and social housing providers in producing health and social care plans.
Baroness Wilkins Portrait Baroness Wilkins
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My Lords, I fully support the amendment just spoken to by the noble Baroness, Lady Jolly, in relation to housing. I speak to Amendment 330A, which is down in my name and in those of the noble Baroness, Lady Finlay, and the noble Lord, Lord Low. It is a probing amendment to ask the Minister to ensure that education providers, including academies, schools and colleges, are represented on the health and well-being boards, in order that there should be integrated planning for disabled children. The National Children’s Bureau, through the Every Disabled Child Matters campaign, has raised concerns that the Bill does not provide equivalency with the Education Act, which has retained the duty to co-operate for schools. This Bill does not ensure that schools will be an integral part of the health and well-being boards, so, while education providers will have a clear duty to co-operate, there would be no equivalent duty on health and well-being boards to include education providers.

Integrated planning and commissioning is particularly vital for children with complex needs, such as disabled and looked-after children, who need co-ordinated interventions from a range of services. Many disabled children require health-related services at school, including physiotherapy, occupational therapy and speech and language therapy, as well as specific medical interventions. There are often problems with providing such services on the school site, or it is not properly co-ordinated with other activities at the school. As Adam, one young disabled person, said,

“I went to a mainstream secondary school. I did not get to see a physio or OT regularly. This is because I didn’t go to a special school for disabled people. I think health, education and social services need to work more closely together”.

This lack of co-ordination of support presents disabled children and young people with barriers to participation in education that their peers would take for granted. As Sir Ian Kennedy’s recent report, Getting it Right for Children and Young People, recognised:

“If children do not receive appropriate support from the school, at worst those with severe health problems receive a ‘double whammy’ as their ill-health damages their education by disrupting their schooling, either through being forced to stay at home or by long stays in hospital. Children with severe or long-term conditions receive enormous benefit from continuing their education during their treatment. And there are social as well as educational benefits. Continuing in education is a signal, to the child themselves, the parents or carers and the peer group, that a child with a severe or complex health condition continues to belong to the ‘community of children’ and does not become defined by their condition”.

When education providers and health services do not collaborate to meet the needs of children and young people, it also has a significant impact on their families. A study by Diabetes UK found, for example, that half—46 per cent—of primary school pupils with type 1 diabetes and one-third—29 per cent—of their secondary school counterparts report that their parents have had to reduce hours or give up work to help them administer life-saving insulin injections. It is clear that when children need such support during school hours, local services should work together to ensure that it is available.

As the Minister will know, the Department for Education’s recent Green Paper, Support and Aspiration: A New Approach to Special Educational Needs and Disability, proposed a more co-ordinated approach to the delivery of education, health and social care. These proposals included the delivery of a single assessment process, a joint education, health and care plan, and a local offer, which sets out all services available to disabled children in the area. EDCM is concerned that these proposals will not be deliverable if education providers, including academy schools and colleges, are not given a presence and a voice at health and well-being board level, which this amendment would provide.

Lord Ramsbotham Portrait Lord Ramsbotham
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My Lords, I rise to speak to my amendment, Amendment 330C, which relates to the fact that offender health is a public health—particularly prison health—issue. Since almost every prisoner will be released, their mental and physical state when they are is therefore a matter of public interest. I wish to speak to something related to imprisonment, rather than to imprisonment itself. There are two other activities associated with this part of the Bill which also affect activities of other ministries, the Ministry of Justice and of course the Home Office, to which I would like to draw attention.

As we all know, prisons are wells of psychiatric morbidity. At one end of the spectrum, some 500 prisoners have to be transferred to special hospitals each year. At the other end, some 70 per cent are suffering from at least two personality disorders which are bound to impact upon their behaviour. Prisons are also the unfortunate recipients of people who were in asylums, until these were abolished. To prevent that happening the previous Government initiated a report, conducted by the noble Lord, Lord Bradley, on diverting people with mental health problems away from prison. This was a very, very comprehensive report, with recommendations which affected the courts and the police in particular. This Government, as I understand, have accepted the recommendations and are working towards them. However, they of course depend on there being proper mental health assessment and treatment available at the point where a person comes into contact with the criminal justice system. This is usually at a police station, to start with, and then at a court. I have been to see one of the pilot schemes in Brighton, where an extremely able psychiatric nurse in the court was able to divert people away from imprisonment, not least because they had taken enormous trouble to ensure that the necessary support for people with mental health problems was available from that moment on. Without that support being available, the scheme becomes worthless. However, before that, the first time that people come into contact with the system is in police stations. What worries me about progress in the future is that unless there is a police representative on health and well-being boards able to represent the needs of the people who make those assessments at the police station, the diversion scheme could fail at its start. The purpose of my amendment, therefore, is to ask the Minister to consider very seriously the addition of a police representative on health and well-being boards, to make certain that the needs of police stations are represented at source, in every area of the country where diversion schemes will start.

I say this because when I started inspecting prisons, I discovered that prisons, alone in this country, were not part of the National Health Service. Indeed, they did not become part of the National Health Service until 2003. The result of that was that the needs of people from prisons were not built into National Health Service estimates, and so they were always competing for other requirements. To avoid that error being repeated, I therefore believe that it is essential to have police representation at the place where planning is carried out.

My second area is to do with probation. With regard to the plans—“Breaking the Cycle”, the rehabilitation revolution and all the noise that has come from the Ministry of Justice about reducing the prison population and providing alternatives to custody—most of that comes down to the probation service. There is absolutely no reason why the probation service should not carry out exactly the same programme as happens in prisons; that is, people are assessed, programmes are made and conducted, and then the person is transitioned into the community. There is no reason why the assessing, the programming and the supervision of mental and physical health treatment should not happen to somebody on probation in exactly the same way as it happens in prison. However, the probation service needs help and guidance in the provision of that assessment and programming. That is why I am asking the Minister to consider that a representative of the probation service should be included on the health and well-being board, in order to ensure that its needs are included in the plans, so that the probation service can make the delivery of community sentences more effective and more acceptable in the public eye, and is therefore able to contribute to what the Secretary of State for Justice is seeking; namely, a reduction in the prison population.

Funding of Care and Support

Baroness Wilkins Excerpts
Thursday 24th November 2011

(12 years, 7 months ago)

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Baroness Wilkins Portrait Baroness Wilkins
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My Lords, I thank my noble friend Lady Pitkeathley for initiating this timely debate. The noble Baroness, Lady Campbell of Surbiton, had hoped to take part but, sadly, she has developed a chest infection and I know that all noble Lords will want to join me in wishing her a speedy recovery. She asked me to speak to the points that she wished to make, which I share, and to thank Marija Davidson of RADAR for her help.

The noble Baroness, Lady Campbell, particularly wanted to speak on future policy for people below pension age who need personal care, people who are either born disabled or who become so in their younger years. Her main points focus on the issue of human rights and the place of the precious, long-fought-for concept of independent living in future policy on social care.

The proposals of the Commission on Funding of Care and Support rely heavily on building the ability of people to plan and prepare to contribute financially. This is, of course, sensible for those who have had years of employment which allowed them to save for their inevitable decline. But many disabled people do not have that opportunity. Only 50 per cent of disabled people of working age are in work, compared to 80 per cent of non-disabled people, while 23 per cent of disabled people have no qualifications compared to 9 per cent of non-disabled people. The average gross hourly pay for disabled employees is £11.08, compared to £12.30 for non-disabled employees.

All this does not bode well for our ability as disabled people to save and pay for our social care support, whether early or later in life. For those born disabled, the odds against them are stacked even higher, as they will never be able to accrue enough capital to purchase the big things in life, like a property, or to start a business. Disabled people do not start from a level playing field, and it was pleasing to see that the Dilnot report recognises this inequity in its recommendation 3:

“People born with a care and support need or who develop one in early life cannot be expected to have planned in the same way as older people. Those who enter adulthood already having a care and support need should immediately be eligible for free state support to meet their care needs, rather than being subjected to a means test”.

But what will that “free state support” consist of? How will our precious concept of independent living fare in this new world?

An inquiry is currently being undertaken by the Joint Committee on Human Rights, of which the noble Baroness, Lady Campbell, is a member, into Article 19 of the UN Convention on the Rights of People with Disabilities, which concerns independent living. Three things have become clear during the evidence sessions. First, there has been a decline in opportunities for independent living due to decreasing financial resources. Secondly, there is a continued reluctance of local authorities to embrace choice and control for disabled people so that they can exercise independent living. Thirdly, there is buck-passing. It seems that as soon as money gets tight, the urge to snatch back power and control is overwhelming. The increase in charging for social care over the past decade has been matched by a decrease in disabled people's freedom to live independently.

A Social Care Institute for Excellence report published in February highlighted that social care budget holders are losing control over their budgets, as councils require accountability for every single expenditure. Just over a year ago, disabled people receiving social care support through direct payments had the flexibility to spend their payment in the way they deemed best to meet the agreed objectives in their support plan. It is now being asked whether this is a luxury that local councils can afford. However, what they are calling luxury is Article 19 of the UN convention. The positive effects and benefits of independent living, which basically mean choice and control over how one’s personal support money is spent, are legion. Not only does it mean that disabled people can work, volunteer, support families and be active but by providing social care in this way, service users will create new markets through their individual choices. However, local authorities still do not see it that way. In their desperate efforts to control spending, councils are mistakenly snatching back our control, which will undermine the very markets that we need for 21st-century social care. Are we past the heyday of direct payments, which were hailed as a life-starter by disabled people, just when they have barely started to roll out across the country?

Disabled people report a full-steam reversal on supported independent living in the community, always on the grounds of cost. Many disabled people who have had high levels of need are now being asked or, in some cases, cajoled on to continuing care, where there is no right to control your personal budget.

We have to face the fact that there is a cost to disabled people enjoying their human rights, as there is to most human rights—the right to a fair trial, for instance, the right to education and so on. Surely that is a price worth paying collectively, as the whole of society will benefit, not just disabled people. The evidence to the JCHR Article 19 inquiry has demonstrated this starkly; and we have ever-present evidence in this House in the noble Baroness, Lady Campbell, who writes:

“Without another human being by my side, 24/7 to help me function equally, I cannot exercise any of my fundamental human rights”.

Disabled people have serious concerns whether independent living is being eclipsed in the current debate on social care reform. Will the Minister give an indication of the Government’s thinking? For example, are the Government considering allowing personal health budgets to be controlled far more by disabled people? Of course, there is also the issue of portability, just spoken to so eloquently by the noble Lord, Lord Pearson of Rannoch—the right to disabled people’s freedom of movement. The Minister in the other place has expressed a keen desire to make portability a reality. However, it seems that this Government are talking about portability of assessments. Most people can already take their assessment with them; the issue is whether they will be satisfied in the new area. It is portability of outcome that disabled people are seeking. That is what the noble Baroness, Lady Campbell, is seeking in her Private Member’s Bill and we hope it will receive government support.

Independent living is a great good for disabled people and society at large. We are seeking reassurance from the Minister that the right to independent living will take its rightful place in underpinning the future of social care and in its funding.

Health: Neuromuscular Services

Baroness Wilkins Excerpts
Wednesday 30th March 2011

(13 years, 3 months ago)

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Baroness Wilkins Portrait Baroness Wilkins
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My Lords, I thank the noble Baroness, Lady Thomas of Winchester, for securing this debate and I congratulate the All-Party Parliamentary Group for Muscular Dystrophy—and particularly the noble Baroness, Lady Thomas, for her part in it—on its excellent work in putting such a clear focus on the current significant gaps that exist in neuromuscular care services and the improvements that are required.

The noble Baroness, Lady Thomas, has given us an excellent overview of the current situation and the positive steps being taken by the Department of Health to address the problems. However, we are living at a time of great upheaval in the NHS, much of which already seems to be under way, even though the underpinning legislation has not been fully debated, let alone passed. Therefore, how can we ensure that any improvements will be maintained?

I should like to talk about my concerns in relation to the sub-national structure of the proposed new NHS Commissioning Board and the commissioning of specialised services, which, as we have heard, are crucial for people affected by neuromuscular conditions.

As we have heard, significant progress has been made regarding improvements to neuromuscular services with an increase in the number of muscular dystrophy care advisers across England. I welcome the fact that all 10 specialised commissioning groups either have reviewed or are reviewing services for people with neuromuscular conditions, and that vital work is under way to improve access to specialised neuromuscular services. This work must be maintained in a structured approach as the new NHS Commissioning Board undertakes commissioning of specialised services.

Currently, neuromuscular services are commissioned on a regional basis by the 10 regional NHS specialised commissioning groups, with top-slicing of the PCTs. This method of commissioning these rare and very rare conditions has been endorsed by a new body of experts, the British Myology Society, which is a multidisciplinary forum of consultant-level experts on muscle disease, myasthenia gravis and spinal muscular atrophy. What will be the regional boundaries and structures that will be created under the new NHS Commissioning Board? Will the Minister also say how the transition to the new commissioning arrangements will be managed? Can he give an assurance that the development of neuromuscular services will not be interrupted by the changeover to the new commissioning set-up?

As I said earlier, the work of the all-party parliamentary group has been outstanding in focusing attention on the service. At a meeting earlier this month, Teresa Moss, director of the National Specialised Commissioning Team, outlined ground-breaking steps towards a national neuromuscular services plan, which is a hugely welcome development for people affected by muscle disease across the country. As she said:

“I am pleased to share the good news that a national working group has been set up, with representatives from each of the SCGs across England as neuromuscular services will be a priority in next year’s work plan for the ten Specialised Commissioning Groups and the National Specialised Commissioning Team.

This is the first time that a coherent, national approach has been taken with regard to the planning and coordination of specialist neuromuscular services and I look forward to working with the Muscular Dystrophy Campaign, clinicians, commissioners and people living with muscle disease across England to take this important work forward”.

In the light of that, will the Minister outline how the Department of Health will publicise the details relating to the national neuromuscular services plan to the relevant health professionals throughout the service and, most particularly, how it will publicise details to people who are affected by muscle disease?

Finally, the Muscular Dystrophy Campaign has serious reservations regarding the impact of the proposed move to GP commissioning for non-specialised primary and secondary care for the 60,000 children and adults in England with muscular dystrophy and related neuromuscular conditions. Will the Minister clarify how specialist services commissioned by the NHS Commissioning Board and more generic services commissioned by GP consortia will link together?

Health: Chronic Obstructive Pulmonary Disease

Baroness Wilkins Excerpts
Wednesday 17th November 2010

(13 years, 7 months ago)

Lords Chamber
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Earl Howe Portrait Earl Howe
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My Lords, I will be happy to write to the noble Baroness on that matter, as I have not been briefed on it.

Baroness Wilkins Portrait Baroness Wilkins
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My Lords, both my brothers and my father died after years of breathlessness, which is an appalling condition. Can the Minister say why pulmonary rehabilitation courses are being closed around the country, despite being recommended by the NICE guidelines?

Earl Howe Portrait Earl Howe
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My Lords, I am concerned to hear the noble Baroness’s comments because I know that an enormous amount of good work is going on around the country. There are programmes to encourage clinical leadership, improvement projects designed to integrate services, a commissioning toolkit, benchmarking data on outcomes and tools to aid local campaigns. If the services designed to help COPD patients are being diluted in any way, I should be very concerned about that and interested to hear the details.

Carers

Baroness Wilkins Excerpts
Wednesday 16th June 2010

(14 years ago)

Lords Chamber
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Baroness Wilkins Portrait Baroness Wilkins
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My Lords—

None Portrait Noble Lords
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This side!