Mental Health Services

Baroness Uddin Excerpts

Wednesday 25th February 2015 Lords Chamber

[Baroness Uddin (Non-Afl)]

My Lords, the commitment to ensuring equity between mental and physical health services is in disarray. The NHS has undoubtedly hit mental health provision hardest, according to a BBC report, with as many as 1,700 beds being cut and patients having to travel huge distances to access care, putting patients and families through significant distress and displacement. Despite the promise of guarantees of parity in funding, the overall proportion of funding going to mental health has been falling, compounding the long-standing underfunding of mental health services which is so costly to human lives and our society at large.

The impact of these cuts on children and adolescents has often been lost in the furore about mental health. I thank the noble Earl, Lord Listowel, for highlighting this issue, not only through this debate but also through his involvement in Young Minds, which has campaigned so effectively to highlight cuts and freezes to mental health services across most local authorities.

Only yesterday, I and colleagues in this and the other place, heard Sally Burke describe her family’s plight when her daughter Maisie, now aged 13, went into crisis. Suicidal and distressed at the age of 12, Maisie had to be taken by the police—because no GP was available to tend to her—and was eventually hospitalised in Stafford, 130 miles from her home in Hull. Sally Burke has had to fight tooth and nail for her daughter to get appropriate care, including getting her MP, Alan Johnson, to intervene with Norman Lamb and the health commissioner in order to get Maisie moved closer to home. However, she still remained 60 miles away in Sheffield due to the removal of mental health beds for children in Hull.

One of the many distressing features of Maisie Shaw’s case is that she was only aged 13, after being hospitalised, when she was diagnosed with autism. As a high-functioning autistic child, at no point had the health or education practitioners she had come into contact with pushed her towards a diagnosis. Instead, Sally Burke says that she was made to feel responsible for Maisie’s irregular behaviour as a small child. She has had to develop huge resilience to withstand battle after battle with atomised public services. She describes the experience as fundamentally “cruel”. This is one example among many that has come to our attention, particularly from carers struggling to manage their loved ones with mental health and autism as an added dimension.

The figures are stark. NHS England reports that as many as 70% of children and young people with autism have at least one mental health disorder. Some 40% have two or more mental health disorders. The Minister will acknowledge that the condition of autism is associated with significant mental health needs. At present, however, specialist child and adolescent mental health services—CAMHS—for autism are few and far between. As NHS England has acknowledged,

“there is a scarcity of professionals with the necessary levels of expertise to provide this highly specialist service across the country”.

Professionals working within CAMHS say that children are not adequately supported while waiting for psychological therapies and that support for parents and carers is negligible.

Can the Minister assure the House that, to address these challenges, the Government will address autism specifically in their work on mental health, for example through the task force on children and young people’s mental health and via the mental health system board and the ministerial advisory group? Given the complexity of autism, will he agree that this group requires specialised attention?

Autism

Baroness Uddin Excerpts

Wednesday 4th February 2015 Lords Chamber

Asked by

[Baroness Uddin]

To ask Her Majesty’s Government what steps they are taking to understand the causes of autism spectrum disorders and speed up diagnosis.

[Baroness Uddin (Non-Afl)]

My Lords, I beg leave to ask the Question standing in my name on the Order Paper. In doing so, I draw the House’s attention to my declared interest.

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

My Lords, there are a number of current government-funded research projects linked to autism. These include a Medical Research Council study to identify why certain genetic mutations can cause problems during brain development. By following the National Institute for Health and Care Excellence’s guidelines and toolkits, autism diagnosis can be speeded up. NHS England also has plans to use its local audit teams to provide assurance that people’s experiences of the diagnostic process are acceptable.

[Baroness Uddin]

My Lords, I thank the Minister for that thoughtful reply. He and I agree completely that there have been massive improvements in diagnosis over past decades. However, according to the Government’s Think Autism document, reports by the National Autistic Society and the BME organisation Include Me TOO, the experience of many parents seems to be that there are significant disparities and underdiagnosis, particularly among the BME communities. Given the crucial importance of timely diagnosis to the future prospects of someone with autism, how does the Minister’s department intend to address this currently patchy and inconsistent assessment service for all those who are identified as needing a full diagnosis on time and according to the Government’s own standards, and how does it intend to monitor progress?

Mental Health: Beds

Baroness Uddin Excerpts

Tuesday 29th July 2014 Lords Chamber

[Earl Howe]

It certainly is important that we get to the bottom of what is really happening. We take this issue very seriously. The Care Quality Commission intends to explore the issue of people being detained in order to access psychiatric units in its ongoing review of emergency mental health care. The findings of that review will be published later this year. The CQC’s Mental Health Act commissioner regularly and routinely looks at the lawfulness of detention. In fact, the Care Quality Commission is currently developing a new approach to its responsibilities as a regulator of the 1983 Act.

[Baroness Uddin (Non-Afl)]

My Lords, as a former social worker I know all too well the real cost of sectioning people, the impact that it has and, of course, the immense cost to the overall economy. How will the Government ensure that communities are equipped to look after those with moderate needs, some of whom will have learning disabilities and conditions such as autism spectrum disorder, before a crisis point is reached?

[Earl Howe]

The noble Baroness referred to people with moderate health needs, which is departing slightly from the Question on the Order Paper. However, I can tell her that mental health policy and its delivery is now a major focus. We have a mental health system board to ensure that all the elements of the health and care system work as effectively as possible together. There is a ministerial advisory group in operation. Parity of esteem is reflected in the NHS constitution and in the Health and Social Care Act 2012. We have challenged NHS England through the mandate to make measurable progress this year towards achieving parity of esteem between mental and physical health.

Health: Transition to Adult Health Services

Baroness Uddin Excerpts

Wednesday 11th June 2014 Lords Chamber

[Earl Howe]

My noble friend raises another extremely important point which applies not only to cancer, but also particularly to mental health settings. We have had many debates in this Chamber about age-appropriate settings. I will take her point back with me and find out where we are in our dialogue with stakeholder groups.

[Baroness Uddin (Non-Afl)]

My Lords, can the noble Earl tell the House whether the commissioning will specify autism in the service specifications? Further, will the NHS England staff who are responsible for implementing these measures be trained to deal with the issue of autism?

[Earl Howe]

The noble Baroness raises an important point and I can reassure her that we are addressing the full range of complex needs in children and young people. She may also be interested to know that Health Education England will be working with the Royal College of General Practitioners and the Royal College of Paediatrics and Child Health to develop a training course that will allow GPs to develop a specialist interest in the care of young people with long-term conditions. The aim is to introduce the course in September 2015. It will include a particular emphasis on the transition from childhood.

Independent Living Fund

Baroness Uddin Excerpts

Monday 12th May 2014 Lords Chamber

[Earl Howe]

As the noble Lord knows, local government social care funding is not ring-fenced. We believe that allowing local authorities the flexibility to manage their budgets locally means that they can respond to local needs and priorities better. The Care Bill, as I have just said, will require local authorities to involve the person in the development of their care and support plan and, as far as possible, agree that with them. The person’s care and support plan may be different from their current package, but the central point is that they will be at the heart of the process to ensure that the package provides them with choice and control over their lives.

[Baroness Uddin (Non-Afl)]

My Lords, the Government’s recently published strategy, Think Autism, vowed to help people with autism spectrum disorder to live independent lives. However, the abolition of the Independent Living Fund withdraws the very scheme that was set up precisely to help those vulnerable people to live in the community. How many people with autism spectrum disorder currently receive support under the Independent Living Fund and will therefore be affected by this closure?

[Earl Howe]

My Lords, I do not have that figure in my brief but the number of people receiving payments from the Independent Living Fund is relatively few in comparison to the total number of people receiving adult social care and support. If I have any further figures that I can supply to the noble Baroness, I shall be happy to write to her.

Care: Older People

Baroness Uddin Excerpts

Wednesday 7th May 2014 Lords Chamber

[Earl Howe]

My Lords, I can assure the noble Baroness that there is no chaos and confusion. As regards reduced numbers, which was where the noble Baroness started, the transformation in the service model that we are promoting focuses above all on prevention and is designed to enable people to live independently for longer, as I said earlier, so as to reduce the number of people who are dependent on formal care. Councils have told us that lower social care user numbers are partly due to the success of their core prevention work, but also due to increased use of re-ablement services for people who leave hospital to help them get back on their feet. As regards the Better Care Fund, there has been no delay there. We wanted to set aside enough time to make sure that all areas of the country have developed comprehensive plans for joined-up care. The better care plans start from April next year, as the noble Baroness is aware, and we have asked for early versions to be completed a year in advance so that we can review them, check their level of ambition and test how they will be delivered. That is what is happening now and we are broadly on track with the programme.

[Baroness Uddin (Non-Afl)]

My Lords, people with autism spectrum disorder often spend much of their lives dependent on their parents, who are likely to die before them. In the light of the evident local authority distinction between critical and substantial eligibility thresholds, how will the Government ensure that people with autism are supported into old age by a social care system that helps those with moderate needs to live independently for as long as possible?

[Earl Howe]

My Lords, the national eligibility threshold has been set at a level to reflect the most common current practice of local authorities. That will allow current practice in 98% of local authorities to continue as it does at present. The national minimum threshold will mean that people with autism, others who need care and carers will know what level of need is eligible for local authority care, no matter where they live in the country. I think most people welcome the element of the Care Bill that gave that certainty.

NHS: Mental Health Funding

Baroness Uddin Excerpts

Wednesday 2nd April 2014 Lords Chamber

[Earl Howe]

My Lords, I share my noble friend’s concern. I am aware that some local authorities are not giving the necessary priority to this very important area of service. It is an area that local health and well-being boards should focus on. Our aim must be to support children and young people with mental health problems, wherever possible, in the community where they live rather than seeing them go into acute settings. Admission to hospital should be a last resort. While we have no direct leverage over local authorities, we shall endeavour through NHS England and joint working with area teams to ensure that this message is not lost.

[Baroness Uddin (Non-Afl)]

My Lords, on this seventh World Autism Awareness Day, will the Minister join me in paying tribute to the parents and campaigning organisations? I ask him, on behalf of the one in 100 autistic individuals in this country who are disproportionately affected by mental illness: given the actual reduction in cash investment in mental health services, do the Government agree that funding for mental health must encompass funding for the prevention of illnesses among those most at risk rather than responding to crises that can be prevented by early intervention?

[Earl Howe]

I agree with the point made by the noble Baroness. Prevention is much better than having to cure. I pay tribute to those organisations that champion the cause of those with autism. It is a tribute to the previous Government that they published the Autism Act, part of which involves collecting evidence at local level about the population affected by autism and, in that way, focusing minds at local level—principally the health and well-being boards—to direct services appropriately.

Care Bill [HL]

Baroness Uddin Excerpts

Tuesday 21st May 2013 Lords Chamber

[Baroness Uddin]

My Lords, I come to this debate from the perspective of a professional in the social care sector, as well as with experience as a local authority councillor and, not least, as a carer for over 30 years. I agree that we are at a crossroads for our social care system. In my contribution, I shall draw on the evidence presented to us in the Joint Committee inquiry on the Promoting Independence, Preventing Crisis report, which was ably led by the all-party parliamentary groups on local government and disability. I take this opportunity to salute the work of my noble friend Lady Campbell, Anne McGuire, Heather Wheeler, and the noble Baroness, Lady Wilkins.

Much emphasis has rightly been put on the demands of our growing ageing population, and it is right that we do so, as is the fact that one in three of those who use our care services are disabled people of working age. I would like to focus on that aspect, and I make no apologies for unreservedly quoting some aspects of the inquiry, which I commend to the House.

For too long, Governments have used a sticking plaster approach and incremental improvements in dealing with adult social care, resulting in systems that are bewildering for the recipient and unwieldy for authorities to administer. So I, too, welcome the principle of adult social care reform. The Joint Committee inquiry took evidence from a long list of expert witnesses representing all sectors, all the major disability organisations and those involved in statutory provisions, as well as local authorities and academia. There was undeniable consensus, and a call for disabled people to be at the heart of social care policy reform as well as making decisions in their care. In doing so, we must not see them as passive recipients, but must uphold their human rights under the UN convention to which the United Kingdom is signatory, and embrace the fundamental principles of independence.

There are pervasive concerns that much of our provisions fall significantly short of providing dignity and choice, thus hampering independent living. Of course, the funding shortage is a reality, but we cannot allow those who may be voiceless to be sidestepped at the behest of what may be regarded as best value by locally set criteria. The evidence received by our Joint Committee points to local authorities struggling to achieve the best outcomes, resulting in raising their eligibility threshold for care provision. Many instances have been cited, implying that current eligibility criteria have led to many thousands of disabled individuals falling out of the care system altogether.

The statistics are astonishing. The Audit Commission on social care in England found with the fair access to care system in 2005 that 50% of 152 local authorities in England provide services to those with moderate needs and above but, by 2012, 84% were only providing services at the higher threshold of substantial need, with three councils now providing social care to people who fall into all four eligibility bands and only 24 councils providing care to those with moderate needs and above. The Care Bill will fail to improve the social care system for disabled people if eligibility is set so high that those in need will not receive even the basic help such as washing, dressing or getting out of the house. These changes, challenges and differences in eligibility are bound to lead to more disabled people left ineligible for care and support, contrary to the Minister’s claim that the Bill will provide compassionate and consistent care to those who need it.

The inquiry committee hopes that the Government will consider more uniformity in setting thresholds for eligibility right across the country, ensuring that the 2013 spending review will give due regard to adequate resources being made available so that the needs of disabled people are not compromised. I was surprised to hear the Minister say that legislation will not impact on the funding available. How can provision be efficiently provided, as he suggests, when the system is already stretched to its limits? Disabled people deserve to have confidence in any new care and support system, and I hope that we will be able to rectify some of these anomalies.

There is a significant body of opinion calling for prioritising the design of a new framework of eligibility, which should actively engage core stakeholders, addressing gaps highlighted already in the House today. The joint inquiry report suggests that the current fair access to care services criteria should be replaced by a system that is more objective and coherent and implemented across the country, where resource allocation is transparent and enables the disabled person and their carers to take part in the decision-making process. Worryingly, the evidence that we took suggests that there is little cohesion within various partners of care providers. This will stretch the ambition of the seamless services that the Care Bill envisages. Personalisation appears not to break down the barriers between care, housing, transport, leisure and community involvement, particularly when any person moves from one area to another. Therefore, I welcome the commitment in the Bill that continuity of care packages will not be interrupted by any move to another local authority or area. I would like to ask what mechanism will be in place to ensure a smooth transition if that happens, and whose lead responsibility it will be to manage the transition. I suppose that I am asking who will manage the “Oklahoma!” moment and who will provide the leadership.

This Care Bill is happening alongside the Government reassessing all those working-age disabled adults receiving disability living allowance and transferring recipients on to the personal independence payment. The House has voiced significant concerns to the Government, which were augmented last week by the whistleblower giving an insight to reports that individuals were not receiving even-handed services. The fact that supporting evidence given by applicants was not forwarded by the assessing company for assessors to use suggested a bias towards finding reasons to award points begrudgingly or not to award points, thereby affecting resource allocation. I have spoken to a number of carers and this is being seen by some as another cynical example of eligibility criteria being used to reset the goalposts for determining how much financial help people with disabilities require and ultimately receive.

A Member of this House recounted in a meeting last week the experience of being assessed. I hope that that respected individual will not mind my repeating what was said. The whole experience was said to have been so harrowing that the individual felt defeated by the very system which has the ambition of delivering dignity and choice through this Care Bill. I am deeply saddened that so little appears to have changed in the 30 years since I had a bitter experience with my son. Trying to access educational and social care was like asking for rain on Mars. In the end, we as a family were so defeated that we retreated into relying only on our own resources and ways and means.

I agree that reforms need to be made but they must and should be robust and intelligent in respectfully and professionally identifying genuinely deserving individuals, especially as regards those with disabilities which are difficult to understand and those with fluctuating conditions. Indeed, I have been made aware of the case of a disabled adult and her advocates who are trying to augment a personal budget. The person says that she felt bullied by a director of commissioning into accepting a package which represented best value for the authority but completely ignored her condition and needs and possibly violated her right to privacy and family life. If our society is to be judged by how we treat our weakest members, we have some distance to walk. I hope that we will be bold and ambitious enough to remember that social care must not simply be about basic survival but about supporting people to live independently. Independent living means disabled people of all ages having the same universal rights of freedom, choice, dignity and control as other citizens at home, at work, and in the community. It means having the right to obtain practical assistance and support to participate in society and live an ordinary life that others take for granted.

Your Lordships may not be surprised to learn that even in this context there is a distinct difference in the services provided to those from minority communities. It is a fact that 32% of all disabled people live in household poverty. Sadly, for minorities this figure jumps to 44% of disabled people living in household poverty. A report suggests that income for minority disabled people is 30% lower than for the general disabled population. The Equalities National Council and Scope in a report entitled Over-looked Communities, Over-due Change found that services are not fully inclusive for BME disabled people, who experience significant language and communication barriers, social isolation and stigma exacerbated by their lacking access to information and advice, including from well recognised NGOs. Many of the large NGOs operating within communities accepted that they had some way to go in addressing the needs of minority disabled people. In fact, a quarter of BME disabled people report difficulties receiving benefits and accessing independent living compared with 16% of others, indicating that additional unmet needs exist. Evidence on barriers to care shows that BME disabled people's conditions and impairments tend to escalate quickly to higher levels of need. I submit to the House that this is a costly process and that it is therefore even more important that the social care system provides effective coverage at lower care need equivalent to “moderate” within the current fair access to care needs system.

That is not all: meeting criteria and being eligible for support is not the end. An assessment determines the value of someone’s personal budget, and the resource allocation system ascribes a number of points to each eligible need which has been identified and, in referring to a table, sets out the financial value of each set of points, which then fleshes out the support plan to purchase and achieve identified independent living outcomes. Final decisions about the value of personal budgets are made by an anonymous panel of local authority social care professionals based on information provided by the disabled person, their social worker and the RAS calculation, often without ever having met the disabled person. The Sue Ryder report, The Forgotten Millions, highlights this point and found that a lack of uniformity among local authorities in allocating resources and calculating care packages for individuals is causing deep confusion and stress. A case was brought to my attention recently of a disabled adult who had all services stopped at 6 pm one evening. Apart from the legality of how and why this happened, an anonymous panel had turned down for the third time a request to increase travel by nine miles twice weekly, despite the social worker having great input from advocates on the matter. As the client had received an insufficient explanation from the social worker at 6 pm at night, she had to recall her father from business in London. He arrived at the social work offices the next day to petition the head of services as to why this had happened. Fortunately, services were immediately reinstated, with the family being offered a transfer from a direct service from the local authority to a personal budget.

Many carers claim that all these formal processes lack transparency regarding panels, their remit, obligations and decision-making. Disabled adults and their advocates are forbidden from having adequate details about the panel making the decisions. Surely transparency should be an obligation. If the objective is to provide care and support while maintaining the dignity of the individual, surely it is critical to have the individual or their representative present to ensure that their opinion is heard and valued as they are the experts on their own lives. The panel should have due regard to the contribution of disabled people in determining the nature of their care and support in any decisions that are made. Our report asks that the Government place resource allocation systems on a statutory footing through the Care and Support Bill and place new duties on councils to be transparent about these decisions. I welcome the move to put personal budgets on a statutory footing in Clause 25 of the Care and Support Bill. That should be enhanced to ensure that local authorities are transparent about decisions relating to the allocation of resources. All too often, personal budgets have care costed at one rate, with another rate available if external agencies are used.

[Baroness Garden of Frognal]

I apologise to the noble Baroness but she has been speaking for 15 minutes, which is normally the maximum time.

[Baroness Uddin]

I apologise. I am nearly finished. Anyone not associated with the care sector will become dizzy when encountering the array of acronyms and phrases such as RAS, FACS, DLA and PIP. Indeed, they are fortunate members of our society, with the ability to lead an active, fulfilled and independent life. They are fortunate enough to be able to perform everyday tasks such as getting up, washing, dressing, personal care, food preparation and eating without having to justify even the most basic daily tasks. For those members of our society who are reliant upon our care systems, this Bill represents a new hope that our social care system will enable disabled people to live an independent life which is just and equitable. I note noble Lords’ massive endorsement of the Bill and eagerly await its outcome.