Prisons: Rehabilitation

Baroness Hollins Excerpts

Thursday 6th September 2018 Lords Chamber

[Baroness Hollins (CB)]

My Lords, I add my thanks to my noble friend for introducing this important debate. I will focus on the needs of people with learning disabilities, who make up a surprisingly high number of prisoners, given the low prevalence of learning disability in the population at large. I declare an interest as the founder and chair of Beyond Words, a charitable social enterprise, and as president of the Royal College of Occupational Therapists.

Prison is a confusing and frightening place for people who may not understand how the system works. Not being able to read contributes to such feelings and fears. There are many reasons for low verbal literacy, including dyslexia, adverse childhood experiences and more complex developmental disabilities. But people who struggle with words may have good visual literacy skills and will look for visual clues to help them make sense of their environment. Reading prison information, filling in forms, remembering and following instructions and rules can be impossible. Staff in prison may use unfamiliar words or words that mean something different from their usual meaning outside prison. It is not easy to ask for help, and people with literacy difficulties often try to hide this for fear of being ridiculed or bullied. We do not know for sure how many people in prison have a learning disability, and they are not easy to identify. One estimate is that up to one in 10 adults in prison has a learning disability. And they have very high reoffending rates—one estimate is 40%.

Prison staff should notice if a prisoner needs extra help. Someone may be very quiet or get picked on or bullied by other prisoners. They might not look after themselves properly. Not getting the help that they need may mean that they are often in trouble. Prisons have duties under the Equality Act to make sure that people with protected characteristics are treated fairly by making reasonable adjustments to the way services work. The adjustments needed will vary from person to person. This means that every department in the prison must adapt what it does.

I suggest that there are a number of low-tech ways in which prisons could make use of a person’s visual literacy to build their understanding, empathy and co-operation with prison life and rehabilitation programmes, and to help them keep safer. In the reception area, presenting information in pictures to explain the strip-search procedure might help to reduce anxiety. In the education department, a choice of picture books to read—comics, graphic novels and wordless books such as those created by Books Beyond Words—would provoke less anxiety than offering just written materials. Such books could also be offered digitally through the Virtual Campus, and used therapeutically.

Some more able prisoners volunteer, in schemes such as Toe By Toe, to teach people to read. Such volunteers could also introduce wordless books, including ones that address aspects of both prison and community life. Picture books about how to get and keep a job could be useful to probation officers and to occupational therapists— who are increasingly playing a role in prisons—working with individuals on specific rehabilitation goals.

I am grateful to officials from the Ministry of Justice who met me recently to discuss some of these ideas. I ask the Minister: do the Government have any plans to improve the rehabilitation outcomes of this particularly vulnerable group within young offender institutions and prisons?

Care Quality Commission Review: Deaths in the NHS

Baroness Hollins Excerpts

Tuesday 13th December 2016 Lords Chamber

[Baroness Hollins (CB)]

My Lords, I, too, commend Dr Ryan—Connor’s mother—for her persistence. The truth is that if we could get this right for people with learning disabilities, we would get it right for everyone else. Could the Minister confirm that the national mortality review for learning disability will now be permanent, just like other national mortality reviews such as the one on maternal deaths, rather than for the original three-year period for which it was established? I should declare an interest, having been involved in the tender process that led to the appointment of the Norah Fry research centre to run the national mortality review.

[Baroness Chisholm of Owlpen]

I remember the noble Baroness mentioning this once before in a debate, and I think I said then that there were absolutely no plans for this review to stop. It will certainly be carrying on. We have to ensure that all investigations for mental health patients are of a much higher quality and genuinely involve all the patients and families. We must remember that so often it is the families that know best what is wrong with the patient and how they need to be treated. It is absolutely essential that all clinicians and healthcare workers listen to what relatives or carers are saying about people with mental health or learning disabilities. They know how those people behave at home and how they need to be looked after in hospital. There has to be a joined-up approach between carers, families, clinicians, nurses and everybody who comes into contact with the patient when they go into hospital.

Policing and Crime Bill

Baroness Hollins Excerpts

Report: 2nd sitting (Hansard): House of Lords
Wednesday 7th December 2016 Lords Chamber

[Baroness Jones of Moulsecoomb]

My Lords, I support both Amendments 174 and 175. I rise slightly wearily because I do not know, after the calm, clear and patient explanation from the noble Baroness, Lady Berridge, of why this is necessary and it is illogical not to do it, that I can find any more reasons to give to the Government for making this change. However, I will try.

We heard from Mr Grayling in the Daily Mail today—he was Secretary of State for Transport this morning, but I am not sure if he still is—that the Government are,

“not interested in penalising drivers who have had ‘a glass of wine at the pub’.”

Nor are we. Drinking is a perfectly acceptable way to spend your time, but I object when the person who has had a drink gets into a car, which then becomes a dangerous weapon. We hear again and again that any alcohol in your blood can impair your faculties and behaviour. Drinking and driving is just not something that we ought to accept in civilised society.

We heard that the number of deaths has plateaued at 240 a year since 2010. From the available evidence, there are estimates that 25 people die unnecessarily a year, and we could reduce that number still by bringing down the limit of blood alcohol content. Yet it seems to me that we accept 25 deaths a year. Why on earth do we think it is okay for 25 people to die on the roads? That does not even include the people injured from crashes. Some 8,000 people a year are injured from crashes, so if we accept that 25 lives would be saved, we must also accept that quite a lot of injuries would be prevented as well.

Lowering the limit would be a deterrent. We do not need to wait for Scotland. Multiple countries and multiple reviews show that lowering the limit has a deterrent effect. It is in fact the biggest deterrent, and it is cheap and easy to do. It is something we ought to do quickly. Martin Luther King said that,

“Injustice anywhere is a threat to justice everywhere”.

It is an injustice when we accept that deaths on the road are something we do not want to deal with because we do not want to stop people drinking and getting in their cars afterwards. Personally, I think that is unacceptable.

[Baroness Hollins (CB)]

My Lords, I will speak briefly to the evidence. An analysis was done in Switzerland comparing both novice and experienced drivers who had been fatally or seriously injured, and whether they had been drinking alcohol. The analysis compared two time periods, before and after reducing the legal limits, for 2011 to 2013 and 2014-15. In between-time, the limits in Switzerland were reduced to 20 milligrams for novices and 50 milligrams for others. The study found a larger reduction of serious alcohol-related accidents in both groups of drivers than of accidents without alcohol between the two time periods.

Early trends from Scotland with respect to the impact on fatal accidents of reducing the drink-driving blood alcohol levels to the same levels in December 2014 are also very promising. In 2010, the North report published by the Government reviewed drink and drug-driving laws, and modelled that a lower limit of 50 milligrams of alcohol in 100 millilitres of blood would save a significant number of lives. Applying those models to Scotland suggested that between three and 17 fewer deaths per year could be expected. The good news is that there seems to be a trend of that happening. In 2015, the first full year in which the reduced limit was in place, there were 24 fewer fatal accidents, a 13% reduction, and 98 fewer accidents involving serious injury—a 5% reduction.

As the noble Baroness said, it is difficult to attribute causation conclusively. However, is there really any reason why the results found in other countries should not also apply here? I strongly support a reduction in these limits to the same levels that apply in other UK jurisdictions. We must not forget that in May this year, your Lordships’ House also voted to support this reduction, anticipating that this could save as many as 100 lives a year. The measure is supported by a significant majority of the public.

[Lord Brooke of Alverthorpe]

My Lords, I am pleased to add my support to the two amendments of the noble Baroness, Lady Berridge. As she did, I express gratitude to the Minister for arranging the meeting we had with Andrew Jones, and for producing an evidence-based specialist to give us his views—which were very interesting but not totally conclusive. The House previously adopted a Private Member’s Bill opting to go down to 50 milligrams and got that through earlier in the year. We have not moved any further forward and the conversations yesterday did not seem to indicate much change in prospect. So where can we make some progress? Where is progress needed?

The man who spoke to us yesterday, Paul Williams, said that we really need to focus—I am sure the Minister will say this—on the hardened drinkers and drivers who persist and will not take any notice no matter what we do in changing the limit. He said that in his opinion people fall into two categories: they are either entirely selfish, which is what he was talking about with mainly males who do this; or they are sick. Yet if we look at the number of accidents on the roads where there is a link to alcohol, the disproportionate bulk is among young people. This is where Amendment 175 needs closer attention in future.

Young people are killing themselves on the roads for a whole variety of reasons. Some of them are drinking as well. It was quite disturbing to hear yesterday the Secretary of State say that it is perfectly all right for drivers to drink a glass of wine. For adults, maybe, yes, but it is quite unacceptable for young people—the ones suffering most in these accidents—to hear that. A lot of the accidents arise through their inexperience but they have almost been given encouragement to drink by the Secretary of State. I hope the Minister will take that message back. There is a problem here about younger people that must be focused on.

The Minister suggested that we should look at his report produced in December last year on improving safety on roads. I always take the advice of the Front Bench and looked at that last night, particularly the sections relating to young people. One area he mentioned in the course of the discussion was that young people will be permitted to drive on motorways with an experienced driver with dual controls. That is a good thing and it is in the report.

The other point the report makes is that £2 million is going to be spent on learner and probationary drivers, trying to get better-quality performances from them and to help them in a whole range of ways. I do not know why the Government are going to spend £2 million on this. The Department for Transport has had two previous reviews undertaken by the Transport Research Laboratory—the noble Earl, Lord Attlee, probably knows more about this than I do—focusing on the problems we have with younger drivers and deaths and accidents. It has come up with a range of suggestions, many of which have not been implemented, which might lead to a reduction in the number of people killed. In particular, it has said that we should try early on to get younger people not to drink. It has opted for 50. Amendment 175, which is modest and tries to address the big problem with young people, should not be so lightly dismissed in the way I rather sensed yesterday that we were being dismissed. We were told that there would be a continuing review but no specific review on Scotland. I hope I misunderstood the Minister and she will be able to say to the noble Baroness, Lady Berridge, that there will be a formal review of that. I particularly hope that she will say something more about young drivers.

Health: Parity of Esteem

Baroness Hollins Excerpts

Monday 28th November 2016 Lords Chamber

[Baroness Hollins (CB)]

My Lords, I, too, thank the noble Lord, Lord Alderdice, for introducing the concept of parity in such an interesting way. I admit to being delighted that my amendment to the Health and Social Care Act has contributed to moving mental health issues up the political agenda, with a commitment to parity of esteem. I declare an interest as a former president of the Royal College of Psychiatrists, a former consultant psychiatrist and emeritus professor of psychiatry at St George’s, University of London. I also steered the development of the British Medical Association report published in 2014, Recognising the Importance of Physical Health in Mental Health and Intellectual Disability: Achieving Parity of Outcomes, and I will return to that in a moment.

Parity also means that if a diagnosis of a mental health problem has been made, investigations and treatment should be provided on an equal basis, as they would for a physical health problem. But we know that this is not happening yet, and one reason for this is because evidence-based tests and treatments for mental disorders lag behind those for conditions seen as purely physical. There has been an unacceptable underresourcing of research into the understanding and treatment of mental illness, and this is really important.

Another aspect is the physical health of people with severe mental illness, who face earlier death than people without. As with people with learning disabilities who experience earlier mortality, discriminatory attitudes are probably partly responsible. In July this year, the United Nations Human Rights Council adopted a resolution on mental health and human rights, which highlighted that,

“persons with mental health conditions or psychosocial disabilities, in particular persons using mental health services, may be subject to … widespread discrimination, stigma, prejudice, violence, social exclusion and segregation, unlawful or arbitrary institutionalization, over-medicalization and treatment practices that fail to respect their autonomy, will and preferences”.

I think this is relevant to tonight’s debate.

I have long been an advocate of liaison psychiatry teams in acute hospitals. The announcement by Simon Stevens of a new standard for mental health care is to be welcomed. It says that,

“anyone who walks through the front door of A&E or is on a hospital ward in a mental health crisis should be seen by a specialist mental health professional within an hour of being referred”.

This includes mothers in maternity wards. We should not underestimate how hard this will be to achieve, because it will require not only a change of attitude among health professionals and a change in the culture of hospitals but a completely different way of commissioning and providing mental health services. The standard demands that patients should,

“within four hours … have been properly assessed in a skilled and compassionate way, with the correct next steps for their care planned in partnership with them”—

and, I hope, with their family or partner when relevant.

For me, two very important words in this announcement bear careful thinking about. One of these is “compassionate”. We have spoken about compassion many times in this House in connection with the report of the Francis inquiry but not in connection with parity of esteem. In the department of psychiatry at Harvard Medical School, the idea of Schwartz rounds developed—and these are now being used in some hospitals in the United Kingdom—to provide an opportunity for staff from all disciplines to reflect on the emotional aspects of their work. I suggest that this type of approach is fundamental to breaking down the barriers to the acceptance and understanding of mental distress in our hospitals. In part, their success is because they are looking after the very staff who are working in an environment where mental distress is perhaps not understood, whether it relates to the patient or to the staff themselves. Another initiative that the department at Harvard is researching is whether empathy can be taught to clinicians, with a particular focus on non-verbal aspects of communication.

The second key word in the announcement is “biopsychosocial”, and all three parts of that word must be addressed. A key point about parity, which has already been mentioned in this debate, is that we cannot and must not think about mental and physical illness separately any longer. My main concern about our failure to achieve parity is that we are still separating the mental and physical parts of ourselves in such an unhelpful and inaccurate way. It is almost as if our hearts and our minds are in different bodies, and that the social context in which we live our lives is of no importance.

In current discourse, physical illnesses are seen as biological in nature and in need of biomedical tests and interventions, while mental illnesses draw on neuroscience explanations as well as social and psychological ones. In reality, both mental and physical disorders need to draw on biopsychosocial formulations and responses. The problem arises when medical practitioners fail to make the connections. In many ways, this is not surprising given the current separation of services between different provider organisations and the too-early separation of clinical training into physical or mental. Yet we know that people with mental ill-health are three times more likely to end up in A&E than the general population, and five times more likely to be admitted to general hospital wards in an emergency. Is any more evidence needed for the provision of skilled mental health practitioners to be present in the acute hospital, on an equal footing with other specialists?

The NHS has published an aide-memoire on what every sustainability and transformation plan needs to consider in relation to mental health and dementia. The Royal College of Psychiatrists believes this aide-memoire to be a very important guide. Can the Minister say what the Department of Health has done to promote this document and to ensure that local areas take the advice,

“to think more holistically across mental and physical health, rather than just”,

in terms of a separate “mental health ‘section’”?

Does the Minister also agree that the Government have a duty to address the urgency of the fact that 46% of people with serious mental illness have a long-term physical health condition and are at risk of losing, on average, 10 to 20 years of their lifespan due to physical ill-health? Will the Minister explain how in practice the Government’s policy is expected to have an impact on reducing premature mortality? Will the Minister also tell the House what measures are being taken to increase the essential research funding which will underpin any chance of success in this policy initiative?

Will the Government commit not to sign off any sustainability and transformation plan that does not have a clear plan for improving services for children’s mental health? I have not spoken specifically about children or about people with learning disabilities or autism, who have a much higher prevalence of mental illness.

My final comment relates to the urgent need for more attention and money to be given to creating safe and supportive environments and providing skilled support at home for all people with mental health problems and to take seriously the psychosocial part of the word “biopsychosocial”.

Disability: Premature Deaths

Baroness Hollins Excerpts

Monday 17th October 2016 Lords Chamber

Asked by

[Baroness Hollins]

To ask Her Majesty’s Government what progress has been made in tackling the rate of premature deaths among people with a learning disability.

[Baroness Mobarik (Con)]

My Lords, this debate will be time limited to 90 minutes instead of 60 minutes. The speaking time for Back-Bench speakers will be eight minutes instead of four.

--- Later in debate ---

[Baroness Hollins (CB)]

My Lords, this is our first opportunity since his death in August to celebrate the extraordinary contribution of Lord Rix. He was of course a household name in the 1950s and 1960s for what became known as the Whitehall farces, and was then involved in more than 90 television shows. In 1951, his daughter Shelley was born with Down’s syndrome, and Brian and his wife Elspet were shocked when they were told to “put her away in a home and start again”. Brian used his growing popularity to try to make things better for Shelley and for thousands of others and their families.

Brian Rix joined the House of Lords in 1992 as Baron Rix of Whitehall and Hornsea and spoke tirelessly in parliamentary debates, still fighting for the rights of people with a learning disability until December last year, at the age of 91. I will miss my noble friend’s advocacy and friendship, as will so many in this House. I thank the Royal Mencap Society and Professor Pauline Heslop, the programme lead for the learning disabilities mortality review, for providing me with up-to-date information in preparing for today. I also welcome the maiden speech of the noble Baroness, Lady Fall.

Since the 1990s, there have been a number of reports and case studies that have consistently highlighted that people with learning disabilities die younger than people without. My own research first highlighted this problem in articles published in the mid-1990s showing that adults with a learning disability were 58 times more likely to die before the age of 50, and were significantly more likely to die of respiratory disease than the rest of the population. Twenty years later, CIPOLD, the Confidential Inquiry into Premature Deaths of People with Learning Disabilities, found that this was still the most common immediate cause of death in 34% of cases. Recent data from the Clinical Practice Research Datalink showed that more than three times the number of people with learning disabilities in England die each year than would be expected from general population mortality rates, after allowing for their age and gender profile.

Why is this proving so difficult to change? The practice issues which emerge time and again in studies and inquiries on this issue include worrying findings of professional indifference and discriminatory attitudes, with healthcare professionals still relying inappropriately on their own estimates of a person’s quality of life—attitudes that inspired Brian and Elspet Rix in 1951 and Sally Philips in 2016. A frequent complaint is that health and social care professionals do not listen to those who know the person well when they voice concerns about the person’s health. Cases referred to the ombudsman repeatedly show that professionals do not understand how to apply the Mental Capacity Act. This was echoed by the post-legislative scrutiny committee on the Mental Capacity Act, of which I was a member, which reported in February 2014.

There is also insufficient attention paid to making reasonable adjustments to support the delivery of equal treatment, and a failure to provide the annual health checks that every adult with a learning disability should be offered. In 2013-14, only 44% of eligible people with a learning disability received an annual health check. There are also delays in diagnosis and treatment, and difficulties in accessing assessment and treatment of general health problems. There are also a number of system-level issues, such as a lack of learning from reviews of deaths and a failure to identify that a person has a learning disability in their healthcare record, meaning that the specific health needs of people with learning disabilities are invisible not only to health professionals but to researchers and public health practitioners.

What are the Government doing to improve our knowledge and understanding of the needs of this vulnerable group, for which comprehensive and accurate identification is an essential prerequisite? If we do not know which of our patients has a learning disability, how can we make the reasonable adjustments? I will come back to that. It is important that we keep monitoring these issues for evidence of improvement.

Following the CIPOLD report in 2015, the first three-year National Learning Disabilities Mortality Review programme, LeDeR, was set up at the University of Bristol. Its aim is to drive improvement in the quality of health and social care service delivery for people with learning disabilities, and to reduce premature mortality and health inequalities. It supports local agencies to conduct reviews of the deaths of people with learning disabilities between the ages of four and 74, and to learn from these reviews to improve services.

The programme supports reviews of all deaths, regardless of the cause or place of death—so not just deaths in hospitals but, for example, deaths at home. It is supported by family carers and people with learning disabilities, who all act as advisers. The case reviews are expected to identify and advise on action over the avoidable contributory factors leading to premature deaths in this population.

The establishment of LeDeR is hugely welcome, but a key question is how the NHS and the Government will use the data from the case reviews to implement a national strategy to tackle this continuing scandal. Will the Minister commit that the Government will regularly inform Parliament of progress in achieving improvements in outcomes for people with learning disabilities?

The programme has developed a website, training for reviewers, and illustrated guides and factsheets, and each NHS region is now introducing the review process by training local reviewers, piloting case reviews and offering learning and sharing events. But, unlike the child death review process and many other inquiries, the learning disability deaths programme is not mandatory. Agencies can choose to contribute to reviews of deaths of people with learning disabilities or not and, unlike the child death review, it is time limited, not permanent.

In my opinion, the most important change that is needed is a change in culture within all responsible services at all levels, and this includes making learning disability a sustained priority. But saying that it is a priority is not the same as acting to end the discrimination that we all know exists. Is it not time to mandate reviews into all deaths of people with learning disabilities on an ongoing basis, and for the CQC to scrutinise the implementation of local learning from such reviews at its inspections?

To have any chance of success, the programme requires multiagency sign-up and commitment from all agencies and services that provide support for people with learning disabilities, so that a comprehensive review of the circumstances leading to the death of an individual can be thought about fully. Can the Government give a clear message to local authorities and social care agencies that their staff must be released to contribute to reviews of deaths?

We already know a lot about contributory factors to premature deaths, but we need to move beyond just identifying what has gone wrong into making changes to practice. There is no point in reviewing deaths if subsequent changes to reduce premature deaths are inadequately resourced. What can people with learning disabilities and their families expect from the Government in terms of additional resources to prevent premature deaths, and when can they expect it?

There are some urgent actions that could be implemented immediately. I would like us to empower people with learning disabilities by ensuring that they have a better understanding of the health issues that affect them personally. I spoke about this in the excellent debate secured by the noble Lord, Lord Bird, on the role of libraries and independent bookshops; along with others, I mentioned the importance of reading for health understanding. The difference for people with learning disabilities is the need for accessible information, as set out in the information standard, but also for visual methods of communication to be used as part of enabling the person to demonstrate their understanding, wishes and capacity to consent, and making it easier for health professionals to be able to use the Mental Capacity Act.

Sometimes understanding can lead to better outcomes, just as it can in those people who are literate, through an improvement in quality of life and mood, as found in a recent study at the University of Hertfordshire using a wordless book about epilepsy that is currently in press. Having addressed their own need to understand, these self-advocates can deliver training as experts by experience. Good communication skills and positive non-discriminatory attitudes should be assessed in our universities and trusts because they are the core skills and attitudes needed by all staff—not just doctors and nurses but dentists, opticians and receptionists as well. These skills will be acquired only through direct contact with people with learning disabilities.

The learning disabilities core skills education and training framework, developed by Health Education England and Skills for Care, is hugely welcome, as is the work of the GMC, which has been developing tools for doctors. I have contributed to some of this work personally. Mencap has developed training within the core skills framework, which is co-delivered with people with a learning disability—and the courses are oversubscribed already.

I end my remarks by asking: how will the Government, the Department of Health and Health Education England make sure that training is an absolute priority for trusts and universities?

Transparency of Lobbying, Non-Party Campaigning and Trade Union Administration Bill

Baroness Hollins Excerpts

Tuesday 22nd October 2013 Lords Chamber

[Baroness Hollins (CB)]

My Lords, despite government attempts to allay fears about this Bill, as we have been hearing today and as our mailboxes confirm, there are still grave worries from charities, voluntary organisations and other third-party organisations—worries that their everyday activities will be seriously affected by the excessive bureaucracy required by the legislation. I believe that all non-party political organisations should be allowed to continue their usual work in raising and campaigning on issues relevant to their aims and objectives—even in an election year.

We have been told that the Government do not intend the Bill to prevent non-party political organisations supporting, engaging or influencing public policy, and that the new amendments were intended to address misunderstandings about its intentions with respect to third-party campaigning. But despite these amendments, anxieties about what third-party campaigners can and cannot do are unabated. I will give a couple of examples in a moment.

There is considerable uncertainty and ambiguity in the wording of the Bill. It is still unclear whether third-party campaign groups will fall foul of the rules if they support specific policies that might also be advocated by one or another political party. For example, in healthcare, would organisations concerned about alcohol, tobacco or mental health issues be able to debate, comment and campaign on these matters without being so restricted by this regulation that they are prevented from carrying out these core activities? These are the questions that people are asking.

There are other questions too. It is currently not clear which expenditure limits amount to “controlled expenditure” and thus fall within the applicable limit. For example, the Government amended the Bill to exempt the costs of annual conferences, but the costs of public rallies, meetings or other events are still included. I therefore have a question for the Minister. Which category would apply for a membership organisation that organises a conference for its members, but which also has a public element with non-member observers and with an invited media presence?

The summary of all this uncertainty is that many organisations share massive apprehension that the Bill could severely limit their day-to-day activities by introducing what some see as an over-the-top regulation. It is not just charities and voluntary organisations that have concerns about the changes; politically non-affiliated trade unions, such as the BMA and the RCN, are concerned that the new amendments do not go far enough. An excellent briefing from the Royal College of Nursing explains that during the general election campaign of 2010, it campaigned on behalf of its members on healthcare issues, such as maintaining investment in services, improving care for older people and a focus on public health. Candidates from all parties were asked to support these priorities and their responses were shared online. Campaigns such as these, aimed at raising standards of care in the NHS, would not be possible if this Bill becomes law. In the eyes of the RCN, the reduction of spending limits and the bureaucratic burden imposed would render this type of activity impossible.

In the other place, the Government offered assurances to charities and voluntary organisations, but I would welcome assurances that they have fully considered the impact of the legislation on other types of third-party groups, such as politically non-affiliated trade unions like the BMA and the RCN. These are trade unions which play key roles in campaigning on issues in the public interest. I declare an interest as the chair of the BMA Board of Science, which raises awareness of public health matters.

The legislation feels rushed. The lack of adequate pre-legislative scrutiny and consultation with those affected is likely to result in a disproportionate and unworkable regulatory regime with damaging consequences.

I add my voice to those calling for Part 2 to be removed from the Bill, or at the very least for a pause for the Government to reconsider. I am sure it is not the Government's aim to limit debate and freedom of expression in this way. I hope the Minister will fully address the concerns that have been raised during this debate.

PACE Trial: Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

Baroness Hollins Excerpts

Wednesday 6th February 2013 Grand Committee

[Baroness Hollins]

My Lords, I also thank my noble friend Lady Mar for raising such an important topic. I have read the research very carefully in preparing my short contribution.

We know that some patients who develop symptoms of CFS/ME will recover fully but that the majority go on to have a fluctuating long-term condition. I agree with the noble Lord, Lord Alderdice, that there is no single cause for this condition. Some 10% to 12% of people who have glandular fever develop the symptoms of CFS/ME, but there are many other precipitants, too. It is a very distressing condition for people to have and is confusing and difficult for families, friends and employers, particularly because the condition may fluctuate in its effects so dramatically and vary in its severity. It is not surprising that people with CFS/ME may feel that they are not believed and that their family and friends are unsympathetic at times. Imagine living with an illness that fluctuates, recurs after mild exertion and is associated with what people describe as brain fog? As it stands, a very limited range of therapies are available and, understandably, this patient group has ended up feeling overlooked and neglected.

The greatest weapon against illness and disease is robust, peer-reviewed research. Research into both causation and the factors that sustain symptoms is important, as is research into effective interventions. I am particularly pleased that current biomedical research funded by the MRC is trying to understand some of the mechanisms at play, including by looking at mitochondrial function, autonomic dysfunction and sleep disturbance. It is essential that we continue to look at the best possible treatments.

I will speak briefly about the PACE trial, which of course most noble Lords have spoken about and which enrolled 640 participants. Just last week, the follow-up study, looking at recovery after one year, was published in the journal Psychological Medicine. Noble Lords may know that the trial showed that an average of only 13 sessions of CBT or graded exercise therapy, over just six months and as a supplement to good specialist medical care, had rates of recovery of 22%. My understanding is that, by “recovery”, the researchers included the fact that after a year these patients no longer met the criteria for CFS/ME. This would be heralded as a fantastic outcome for the treatment of MS, Parkinson’s disease or cancer. Only 8% of those receiving adaptive pacing therapy and 7% of those receiving just specialist medical care achieved the same degree of recovery. In other words, the successful treatments were three times more likely to lead to recovery than the comparison treatments. Of course, that was after just one year, but follow-up is continuing, and I look forward to hearing whether these results will be sustained. I hope the Minister will agree with me that it would be very useful for this study to be funded for follow-up for five years, particularly given the fluctuating nature of the condition.

Better outcomes are achieved for all illnesses, from heart disease and cancer to schizophrenia and depression, when the overall well-being of the patient—biological, psychological and social—is taken into account. That is not to say that there is no physical reason behind the onset of illness, or that physiological effects are not continuing to maintain or modify the disease process. My noble friend’s debate today is concerned with both health and care, including access to benefits. It is yet another reminder of the importance of a holistic approach to care, an intertwining of body and mind. This complex interaction has been acknowledged since ancient times but somehow, over the past 100 years, with the elucidation of many physical causes for illness, the mind-body connection has been somewhat forgotten. Thankfully, this connection has again been brought to the fore by the Government’s welcome commitment to parity of esteem between physical and mental health. The Royal College of Psychiatrists, of which I am a former president, has long been concerned about the physical effects of psychological stress and the psychological effects of physical stress. Interdisciplinary research—which brings together, for example, the neuropsychiatrist with the immunologist—is vitally important.

Could the Minister clarify whether the arrangements being made to ensure that evidence-based treatments, such as those tested in the PACE trial and recommended by NICE, are commissioned and that they do not fall through any gaps caused by what has been called an orphan status for this condition? To explain what I mean, CFS/ME can be classified under both neurological and psychiatric disorders for clinical purposes; it is not clearly claimed by any one specialist group as being its primary responsibility. This means that many people diagnosed with CFS/ME will not be referred to a specialist centre and that the treatment they need will just not be available. Research will shine more light on this condition and begin to distinguish whether subgroups of patients will be more responsive to different new treatments being evidenced and introduced.

Research is needed into all aspects of the illness so that more effective treatments can be found. This must include both biological aspects and any psychological factors that may sustain or lead to the further deterioration of the illness such as, for example, major life events, which are known to cause a relapse in CFS/ME patients. Thankfully, the MRC has recognised the past underinvestment in this poorly understood condition—or set of conditions—by highlighting it as a priority area for research. Through the particular efforts of Professor Stephen Holgate, the CFS/ME research collaborative mentioned by my noble friend will be launched in April, bringing together researchers from all relevant disciplines with patient groups and charities. This is so important. The future is looking brighter for people with CFS/ME and the constructive collaboration of people with different perspectives and contributions will, I hope, prove to be a major step forward.

Mental Health (Discrimination) (No. 2) Bill

Baroness Hollins Excerpts

Friday 18th January 2013 Lords Chamber

[Baroness Hollins]

My Lords, I congratulate my noble friend Lord Stevenson on pursuing this concern so assiduously. I also would like to take this opportunity to congratulate Members of Parliament who spoke about their own experience of mental illness, which took considerable courage. I hope that it signifies the beginning of the end of the discrimination that people with mental illness experience not just in their everyday lives but in some policies, such as the law that we are seeking to change today.

The passing of this Bill will be a crucial step in addressing discrimination against people with mental health problems. Current legislation enabling the removal of the seat of an MP following a period of detention in a hospital is simply outdated. The idea that anyone suffering from a mental illness is incapable of becoming well again is very much against the principles of mental health recovery. I should draw the attention of noble Lords to my interests as a psychiatrist, albeit no longer in clinical practice, and my previous role as president of the Royal College of Psychiatrists, which I know has briefed many speaking in the debate today. With confidence, I can say that mental health problems are treatable. The majority are highly treatable, some having a better prognosis than physical illness.

With appropriate support and treatment people can return to previous levels of functioning, just as people with physical illnesses do. In keeping with the Government’s commitment to parity of esteem for mental and physical ill health, as outlined in the mental health strategy, we must treat those who experience mental illness in the same way as those who have physical illnesses. It follows that, if someone who suffers serious physical health problems such as cancer or cardiovascular disease, no matter how debilitating, is able to retain their seat in Parliament, so should those with mental health problems, even if they require reasonable adjustments to be made to enable them to continue to be present in the workplace. The Disability Discrimination Act requires that of employers and workplaces. Parliament should be setting a benchmark for standards in equality, not lagging behind. It should be possible for Members of Parliament to seek help for and to be open about their mental health problems without fear of discrimination.

To pick up on points made by other noble Lords, some people end up being detained for treatment because they have been afraid to seek treatment earlier—a stitch in time really does save. The right to occupy a position for which you are well qualified should not be prevented simply because of the experience of mental ill health. Sometimes that mental ill health comes about because of some quite devastating life experience. Yesterday, I was fortunate to visit Headley Court, where I saw members of the military services receiving rehabilitation, and to visit in particular its mental health and cognitive services department. I saw the very positive way in which that rehabilitation service helps people suffering from post-traumatic stress disorder, or having difficulty adjusting to life with the injuries that they have acquired on the battlefield, return to their previous lives and make whatever adjustments are required. I was very impressed by the attitude and opportunities being offered to servicemen. We need to see that very positive attitude to getting people back to work being provided in all employment situations.

I welcome the Second Reading of this Bill and hopes that it truly represents an important milestone in the efforts to achieve positive outcomes for people with mental illness. I trust that the Government will fast track this Bill so that it becomes law at the earliest opportunity. I look forward to the Minister’s assurances on this; it is in line with the Government’s commitment to ensure parity of esteem. This important issue must continue to be tackled at both national and local level, and I hope that we will see further improvements in the services offered for people with mental illness so that they achieve true parity, such as sufficient funding for mental health services, as has also been raised.

The final point that I want to make is that people need improvements, and access to and choice of high-quality services. They need evidence-based treatments—and, importantly, we need increased funding for mental health research to make this a possibility. I thank all those who provided briefings for Peers, including the Royal College of Psychiatrists, Mind and Rethink Mental Illness, and for their commitment to continuing to raise these important issues.