PATIENT CONFIDENTIALITY AND THE MENTALLY ILL – 9 December 2010

Dr Julian Lewis: I am delighted to have secured this debate. This is the second time I have addressed the House today and I hope that the consensus that was lacking in the earlier debate will be restored for this one, because hon. Members in all parties have the welfare of the mentally ill very much at heart. We are all constituency Members and we all have to deal with sad cases. Sometimes, we can do something to help people and sometimes it is too late to do anything to help those whom we have lost, but we can still try to achieve something in their memory to help other sufferers in future.

By way of background, I want to make it clear that I have no expertise or practical qualifications in mental health and that my doctorate is not a medical degree. I do, however, have a certain amount of experience stemming from when I first set foot in the House, in 1997, and came second in the Private Member's Bill ballot. The individual who came first in the ballot promoted a Bill to ban hunting and the Chamber was packed on that Friday. I am sorry to say that when we came to debate my Private Member's Bill, which was on improving conditions for people who suffer catastrophic breakdowns and need in-patient treatment, the House was back to its normal sparse attendance. Nevertheless, despite that somewhat cockeyed sense of priorities, the issue of mental health is an enduring one that requires great sensitivity.

Since those days, I have from time to time raised issues that affect my constituency. Most recently, I have been concerned about the closure of the Psychiatric Intensive Care Unit at Woodhaven Hospital, which was constructed on the site of a former mental institution. I was delighted when that great facility was opened in my constituency a few years ago, and I worry about its future now that it has lost the intensive care unit. I recently set up a group of people from different parts of the spectrum of mental health concern in the New Forest area. I asked members of that group, which is called "Support Our Mental Health Services", to drop me a note about why they had joined it. One lady, Mary Stephenson, is particularly concerned about the loss of the PICU at Woodhaven, even though we are left with an acute ward. She wrote:

"On any acute psychiatric ward, there should be an opportunity to remove very disturbed, noisy and possibly violent patients, to have private peace and 'cooling-off' facilities."

That is also for the benefit of other people on the acute ward who do not require intensive psychiatric care. Unfortunately, that facility has now been lost.

We are also concerned about the future of Crowlin House, which is a sort of halfway house. People have joined our group because they are concerned that if that residential facility were to close, those currently housed there might find themselves put into care homes for the elderly or for those with dementia. That would not be suitable for people who are, in a sense, halfway between being in-patients and being in the community.

Other people have joined us from Solent Mind, which supplies various important services. It has drawn to my attention the fact that the Community Mental Health Team is coming under pressure, as it faces losing 20% of its budget because of the introduction of improving access to psychological therapies – IAPT. In itself, IAPT is a good idea, but it is fairly low level and not a specialist service. It was supposed to be in addition to the services available to my constituents. As I have said before in this House, the danger can be seen in what happened to the specialist Student Service in Southampton – I cite that example in view of today's earlier debate. That service is no more because its functions were supposedly moved in the direction of IAPT, but in fact IAPT was not able to take them up. In addition, one of the beneficiaries of a scheme called Supported Permitted Work, David Hayward, has written to me expressing his worry that that is under threat, and I understand that there are concerns about the position of the Vocational Advice Service – my constituent, Lorraine Miller, has written to me about that.

I have painted a general picture about the state of mental health services, which is mixed. We have lost some good services, but we retain quite a lot of valuable assets, although we are worried that they might go. That is why we are setting up a campaign group to try to ensure their future.

My specific concern tonight is the problem that arises when somebody is mentally ill and the people treating that person feel unable to share information about that person's treatment with their carers or their next of kin. For once, I can say that some excellent work has been done on the theory, but I am a little worried about the practice.

I have with me a briefing paper prepared under the imprint of the Department of Health, King's College London, the Institute of Psychiatry at the Maudsley, Rethink, and the NHS Service Delivery and Organisation Research and Development Programme. The paper goes right to the heart of the issue. It is entitled Sharing mental health information with carers: pointers to good practice for service providers, and it seeks to tread a delicate line between preserving patient confidentiality and letting people who care about these patients have vital information about them when they are not in their right mind.

Esther McVey: I congratulate my hon. Friend on securing this debate and beating me to it. I wish to raise the issues faced by a constituent who looked after her husband 24/7 until he passed away in 2006. He suffered from hallucinations, paranoia and depression. He also had falls, lost consciousness and regularly became violent towards her, all of which put a lot of pressure on their relationship and left her upset. Her health deteriorated and she felt that she could not look after him properly. It was not until he passed away that she learned that he had dementia. I have a question for the Minister: should the safety of the carer be put ahead of the patient's right to confidentiality? Should we consider the severity of the patient's mental health problem in determining whether they are fit to keep their condition a secret?

Dr Lewis: I am so grateful to my hon. Friend for staying after this somewhat trying and long day to make that important contribution, because it shows that I am not talking about some quirky, one-off situation. It is a very real dilemma, which requires great thoughtfulness and sensitivity. I do not have time to go into the contents of that briefing paper in great detail, but I shall select just a couple of quotations that show how good it is. It says:

"Carers play an important role in many service users' lives. Their knowledge and expertise represent an enormous resource for statutory and voluntary mental health services. These are reasons why it is so important to include them through sharing information. Providing carers with information to support them in their role can improve outcomes for both service users and carers...Carers fear being denied access to important information to help them in their role. They are also concerned that their own confidences may be broken."

I came to the topic through the case of Mr and Mrs Edgell – my constituents David and Kay – whose lovely daughter Larissa, aged 34, hanged herself in 2006. They have obviously done everything that they can to come to terms with that, but I have a detailed file, which I have shared, because I knew they would want me to, with the Department and the Minister. I shall not go into the detail, because I do not have the time to do so, but it shows that from the earliest stages, back in about 2000, they warned of their fears that Larissa, or Lara as she was known, was seriously at risk.

Subsequently, in about 2004, Lara made a serious suicide attempt, but between then and 2006, when sadly – tragically – she succeeded, her parents were unable to know what was going on between her, the people who advised her in the NHS and, indeed, the people whom she saw privately, the private therapists.

I made it clear to Mr and Mrs Edgell that I felt that little could be done to improve on the excellent briefing document that I have only briefly quoted. It is an admirable piece of work and-unlike so much jargon produced in-house and, dare I say it, within the NHS – admirably clear. It is a first-class piece of work, and I would not alter a dot or comma in it.

When Mr and Mrs Edgell first came to see me in 2007, I wrote to the then Under-Secretary at the Department of Health, the hon. Member whose constituency I should have looked up. Is somebody going to tell me Ivan Lewis's constituency? I am not the only who is stumped – that is the first time I have known Mr Speaker's encyclopaedic memory to let him down. Sorry about that, Mr Speaker. Anyway, I wrote to the hon. Gentleman and said that my main reason for doing so was to focus on two main issues relating to what had happened – [Interruption] – a voice off tells me that he is the hon. Member for Bury South. I am glad that we have sorted that out.

I said that I was writing on two main issues:

"The first is the frequent invocation by doctors who were seeing Larissa of the concept of 'patient confidentiality' when her desperate parents were trying to look after her interests at a time when she was too unwell to be the best judge of them herself."

I went on to say that, after Larissa took her own life, Mr and Mrs Edgell investigated that matter and discovered that the Department of Health had an extremely good policy, set out in the paper that I have described, which it issued in January 2006. The paper seemed to show, as I said in my letter,

"a clear understanding of the importance of sharing vital information with those nearest to the mentally ill person",

but, I pointed out,

"the best policy in the world is worthless if the doctors concerned fail to apply it either out of ignorance or obstinacy”.

Mr and Mrs Edgell discovered only when it was too late how many times – it said how many in the notes of their daughter's various visits to medical professionals – she had had suicidal thoughts.

The response from the hon. Member for Bury South was rather disappointing – I see that I did write the name of his constituency on the reply, so I apologise for having embarrassed Mr Speaker for no good purpose. In the reply, the then Minister states:

"As you state in your letter, the Department of Health had issued excellent guidance regarding confidentiality and people with mental illnesses. However, as you may be aware, the Government's task is to set the national agenda, to put in place national standards and provide overall health service funding. The responsibility for deciding how the national agenda is delivered locally and determining how best to allocate these resources to meet the needs to their local populations rests with local health communities."

I did not think that that was an adequate response. What is the point of producing excellent guidelines on highly sensitive, critically important, life and death matters, in that way and then relying on individual trusts to bestir themselves to the extent that they decide to apply or not to apply them? For once, it was the Conservative Opposition Member who was asking for a bit more central direction because, in this case, central direction was necessary.

The second main concern of Mr and Mrs Edgell was the lack of regulation of the private therapists whom Larissa had been seeing. Larissa was 34 when she died, and was well and truly an adult. However, it is a matter of concern that, even after her death, the people treating her outside the NHS have refused to give up any notes or information about what they were doing during the period she was desperately in need of help. Again, the reply basically said that Mr and Mrs Edgell might wish to contact the British Association for Counselling and Psychotherapy, which is a voluntary professional organisation that currently helps the psychotherapy and counselling profession to self-regulate. Frankly, that is no proper method of ensuring compliance when private therapists have been taking part in the treatment of someone who has ended their life under these circumstances.

My time is pretty much exhausted, so I will confine myself to saying that I hope I have done justice to my constituents and to the memory of their daughter. They have not failed to understand the delicacy of the issues involved and they hope that their daughter's death will mean that, in the future, people recognise that the next of kin and/or the carer must be taken into confidence when people talk about doing away with themselves, even if those people are adults.

Adults do not have quite the same rights when they are not operating within their normal mental framework. We talk about people being "out of their mind", which is perhaps an old way of saying something unpleasant about someone; but there is a literal truth in that phrase. I do not come from a Christian background, but I feel a particular sense of sadness when I hear people singing the famous hymn, "Dear Lord and Father of Mankind". The third line states:

"Re-clothe us in our rightful mind".

When people are not in their rightful mind, they need professional help. The professionals need to talk to each other and the mentally ill need the help of the people who have their interests most closely at heart. Those people are the next of kin and the carers. I would be most grateful if the Minister could give some reassurance for the future.

[The Minister of State, Department of Health (Paul Burstow): I congratulate my hon. Friend the Member for New Forest East (Dr Lewis) on securing this debate. Having had the opportunity to deal with two Adjournment debates this week, I reflect on the fact that this was an entirely fitting and appropriate way to raise very serious matters, which was not entirely the case in the debate that I replied to yesterday.

My hon. Friend is absolutely right to raise these issues and to bring a distressing case to the House's attention. It is the most appalling human tragedy when a young person with so much to live for ends their own life. For the friends and family, the tragedy is all the greater when there is a sense that more could have been done to prevent the person from taking that action. I know that the parents of the young lady in this case continue to grieve for the desperate loss of their daughter. I can absolutely understand their need for answers and explanations, and for assurances from the relevant authorities that out of these tragic circumstances, some good may come. That is what I hope to be able to offer in my response.

I am afraid that I have to start my remarks by saying that this case has some painful similarities to that raised in another debate to which I responded a couple of months ago. In both cases, the clear and consistent flaw was that families and carers were not properly listened to or involved. Indeed, evidence from the National Confidential Inquiry into Suicide and Homicide points to this being a flaw in too many cases. Where things go wrong in mental health services, it is so often due to communication breakdown between agencies and families. While there has been progress in mental health services in recent years, there is more to be done. In some parts of the country, the system is too secretive and defensive, and not sufficiently joined up to secure the best results for the patient.

My hon. Friend will know that we set out in our coalition programme a commitment for hospitals to be open, and always to admit if something has gone wrong. That is why we plan to give effect to a duty of candour in which health professionals and managers would be expected to inform patients and families about actions which have resulted in harm. Mistakes happen-to err is to be human-but the key thing is that the NHS learns and improves practices so that the same errors are not repeated. I know that that is what the Edgell family are looking for. I expect all parts of the NHS to engage constructively with families like them to understand and learn from their concerns. That is also why we are determined to strengthen the arrangements for whistleblowing so that where standards slip or practice is poor, staff can raise their concerns in the knowledge that they will be treated seriously.

Patient confidentiality emerges as a consistent theme in the correspondence that I have seen between the family and the local NHS; I am grateful to my hon. Friend for passing it to me. He recognises, I think, that the judgments that mental health professionals make are often finely poised. They can be damned if they do and damned if they don't. There is a balance to be struck between respecting the patient's wishes, on the one hand, while also acknowledging how friends and family can contribute significantly to the person's safety, ongoing treatment and recovery.

All NHS organisations have clear legal and ethical obligations to ensure that patient information remains confidential. To resile from this principle, particularly in an areas as sensitive as one's mental health, would undermine the trust and confidence on which effective treatment is based, increasing the risk of the patient distrusting and disengaging from clinical care. It is very important to stress, however, that, as guidance provided by the Department of Health and the General Medical Council makes clear, patient confidentiality can and should be overridden to prevent significant harm either to themselves or to others. That very much goes to the point raised by the hon. Member for Wirral West (Esther McVey) in her intervention.

As my hon. Friend rightly said, patient confidentiality should not be a barrier to having conversations with families and carers. Those closest to the individual can play a crucial role in helping clinical teams to understand a patient's illness, and in providing an early warning if their condition changes or deteriorates. I am deeply concerned that not all trusts are applying this principle in practice. We need some basic common sense and compassion in how health professionals deal with concerned families. Having read the paperwork that my hon. Friend shared with me, I cannot help but feel a sense that some medical teams were ticking the boxes but missing the point.

I cannot stand here at the Dispatch Box and enunciate lots of new principles. My hon. Friend is absolutely right that there is already very good practice guidance, as well as clear guidelines from the Department of Health, the GMC and others. However, what we need to do to achieve real change in practice is to ensure that it is clear where professional leadership comes from to drive the practice into everyday action on the ground. One of the actions that I will be taking as a result of this debate is to meet the relevant royal colleges to discuss how we can change and challenge attitudes within general practice-where this all began-and mental health services to ensure that the voice of families and carers is never ignored. Improving mental health is a clear priority for this Government.

There is no health without mental health. Next year, as a result of our commitment to prioritise mental health, we will publish a new mental health strategy, which will set out how the Government will invest in early interventions and the extension of talking therapies, to which my hon. Friend referred, for children and older people. Those things are not all that we must do, but they will make an important contribution to tackling the burden of mental health at an earlier stage, thus promoting recovery and reducing the burden on individuals and society in the long run.

In addition, we will publish a new suicide prevention strategy to set out the steps that the NHS and others need to take to further reduce suicide. I will ensure that the points that have been made in this debate are taken into account as we finalise that strategy.

There is no adequate answer that I can give tonight to my hon. Friend's constituents to make up for their loss. However, I hope that my remarks and the fact that we have looked very carefully at what my hon. Friend said in his correspondence, assure him and his constituents that the Government are determined to do everything they can to ensure that the lessons from this case, and a number of other tragic cases, are translated into better practice in the future and that the good practice that is out there is not the exception, but the consistent norm.

Question put and agreed to.]