Recovery in Mental Health: the Mersey Care Conference 14th November 2014: Part 2

(This continues and concludes my previous blog post reviewing the 2014 Mersey Care conference.)

The next session, Think Family, outlined the work being done on Merseyside to support young carers. This was partly presented by a group of very articulate young carers.

It was stressed that having a parent with mental disorder has effects on the whole family; everyone in that family is impacted. It is important to change cultures and attitudes to mental health and the needs of families. This involves a journey of recovery involving the whole family.

It was pointed out that a third of UK adults with mental health problems are parents. While most are able to discharge their parental roles effectively, children with parents with mental health problems can nevertheless experience poor outcomes in later life.

The young carers described the impact that having a parent with mental health problems has on them. This covers the necessity to be involved in domestic chores, as well as physical and emotional care giving. Educational needs of young carers can often come second, and result in them missing school, etc, and the leisure and social life of young carers can also suffer.

There therefore needs to be a major cultural change: this needs to involve increased visibility and social inclusion, improved access to support and services, improved means of identification of needs, and a more confident and supported workforce.

One of the major achievements is the creation of family rooms in inpatient facilities. The Trust has resourced 16 of these rooms, which are designed to provide a pleasant and safe environment for children to see their parents.

There needs to be an increasing focus on children within the CMHT’s, and the development of a common perspective in order to provide safer services that include the needs of young carers.

The next session was about Youth Mental Health.

It was stated that current services tend to be designed around professionals rather than need. There is poor access to services for children and young people, even though they experience high levels of depression and social anxiety.

There is a huge difference between child and adolescent mental health services and adult mental health. These include problems with service models, with CAMHS focussing on developmental issues, while adult services focus on the diagnostic, and CAMHS stressing psychological intervention, while adult services have a more pharmacological approach.

It is very important to manage the transition between children’s and adult services, as there is frequently a gap in provision. There are also problems with engagement and disengagement. The evidence shows a high referral rate for 16-25 year olds, but poor subsequent engagement. There is also higher comorbidity, for example young people’s problems being exacerbated by homeless, substance issues, etc.

And that ended the morning session.

Dr Carol Henshaw and Pauline Slade, from the Liverpool Women’s NHS Foundation Trust kicked off the afternoon with a sobering examination of issues in perinatal mental health.

Pauline Slade stated that it is vitally important to address mental health problems that emerge during pregnancy and up to the end of the first year postnatal. This is not just of benefit to the women, but is equally important for their child, their partner and society as a whole. The estimated cost to the country of perinatal mental health difficulties is £8.1 billion per annum, whereas the cost of provision of good services would only amount to £500 million per annum.

The main problems that women encounter are depression and anxiety both during and after pregnancy, post traumatic stress disorder arising from birth trauma, and more rarely, but potentially very dangerous, postnatal psychosis. The focus should be on prevention of serious consequences to mental health if at all possible.

One third of women experience childbirth as being traumatic, and 3-6% of these women will go on to develop symptoms of post traumatic stress disorder, and yet currently the systems are not in place to screen and treat PTSD. Clinical studies of effectiveness of potential interventions are still only planned or small pilot studies.

Pauline suggested that it was important to train midwives to assess and treat early signs of PTSD through brief interventions.

Other important strategies included improving access to support through peer assessment and support, and “if/then” planning, which is a simple way to help people to put intentions into practice.

A Self-help tool has been developed for prevention of PTSD, which includes the provision of basic information and simple exercises.

Carol Henshaw outlined the specific problems women with pre-existing serious mental illness experience. These include an increased risk of other health and social issues, a higher risk of problems with pregnancy and the development of the foetus, stigma and discrimination, disproportionate involvement with children’s services, and dual diagnosis, eg. Drug or alcohol problems.

There is also a high risk of relapse and suicide following the birth of the child.

Strategies to address these problems include preconceptual counselling, identifying women at particular risk, and provision of adequate mother and baby units if these are needed postnatally.

She also observed that misattribution of the cause of symptoms can lead to death in the worst case, and that early symptoms can be non-specific, but can then deteriorate very rapidly into serious and life threatening mental health problems.

Professor Rob Poole, Professor of Social Psychiatry at Bangor University, was next up. He examined the impact of poverty and social exclusion on the incidence and subsequent recovery from mental disorder.

He had some alarming things to say about how the consequences of current national policies create structural inequalities, which in turn leads to worse outcomes and greater incidence of mental illness. Unfortunately, depriving the poorest of the basic means to exist and thrive has the foreseeable consequence of ultimately leading to great expense for society as a whole.

There are significant links between serious mental illness, such as schizophrenia, and poverty and isolation. This is known as the urban effect, where merely living in a city can increase the likelihood of  developing mental illness. There is a high correlation, especially for schizophrenia, with local and national inequalities. Even the fact of growing up as a black British person in the UK can have a serious impact on developing mjor mental illness, as a result of structural racism and disadvantage.

The last speaker, the eminent Professor Peter Beresford, built on this theme. Examining stigma as a barrier to recovery, he gave an eloquent and stirring address dissecting the appalling consequences of government policy on the mental health of the nation.

There is a national crisis in mental health, arising from the government challenging people’s right to a good standard of life. The government speaks of “parity of mental health services”, while at the same time not only cutting back on NHS funding for mental health, but at the same time making mental health service users a particular target of government and media hate campaigns.

It was time to fight back against stigma. Peter particularly condemned such iniquitous NHS constructions such as “clustering”. An understanding and practice of a social approach was much more helpful thatn trying to fit people into specific diagnostic criteria.

Peter suggested that psychiatry as a system supports the government’s neoliberal policy to accept inequality. It was important to challenge this. There is also a serious risk that the policy of applying the “recovery” model to intervention in mental health can be interpreted merely as a way to limit access, duration and quality of mental health services to individuals. Recovery should focus on maximising an individual’s potential, even if there is uncertainty as to how much input would be needed, or how long it would take, for recovery to be effected.

These conferences are crammed. As well as the above speakers, Q&A panel sessions were interspersed throughout the day. This provided an opportunity for conference delegates to ask questions of such luminaries as Professor Rich Moth, Steve Chamberlain, Chair of the AMHP Community of Interest at the College of Social Work, and even The Masked AMHP himself.

My own perception of this conference was that it was not afraid to tackle difficult and awkward issues, such as the severe deficiencies in government policy that leads to chronic bed shortages across the country, holes in service provision, and the effects of policies that unfairly target and exacerbate the problems of mental health service users.

However, at the same time, it offered encouragement to professionals and others to continue to struggle to provide the best services possible, regardless of government imposed strictures.

Emad Lilo organised this and previous conferences. He has the gift, not only of being able to persuade eminent speakers to give up their time to attend, but also of steering a course through the day that culminates in a feeling of hope rather than despondency.

I’m looking forward to attending next year’s conference.

Recovery in Mental Health: the Mersey Care Conference on 14th November 2014: Part 1

The annual Mersey Care Social Care conferences, held in Liverpool each November, are always extraordinary affairs, crammed with eminent and fascinating speakers. This year was no exception.

Roger Phillips, presenter on Radio Merseyside and a staunch advocate for mental health, kicked off the proceedings as ever, with an overview of the conference.

Lyn Romeo, Chief Social Worker for Adults in England, was the first speaker. She pointed out that it is in the nature of social work to have to grapple on a daily basis with risk, uncertainty and anxiety. The issues social workers have to deal with are frequently complex, challenging, and require a sophisticated response.

The role of the social worker should be to empower. Social workers employ the professional use of self to ensure and promote choice and the human rights of the people they work with.

Social work should be focussing on the social model of mental health, and should be working on a shift away from the medical, medication led model of intervention in mental health. What matters most to service users is empowerment, promotion of human rights and allowing them a voice. Hence, it is important to stress the social approach to AMHP practice within the Mental Health Act.

Lyn touched on the integration agenda, stressing the importance of social work integration in overall service provision in mental health services, and that social workers should be providing a model of leadership.

Lyn also spoke about the impact o0f the new Care Act on social care provision, andthat it should also be influencing health provision.

The concept of “eligibility” in the Care Act presents a challenge. There is a major role for social workers in recovery, as well as understanding and evaluating risk, taking into account the individual service user’s own perception of risk.

There followed an inspiring presentation of Mersey Care’s Recovery College programme. The programme was officially launched in September 2013, and it has led to a transformation of the culture of service provision. “Recovery is about having and building a meaningful, satisfying and contributing life”. It is therefore about the development of new meaning and purpose in one’s life.

The key components were identified as a move to person centred “dafety planning”, streamlining the route to employment and meaningful occupation, and empowering selrf management and learning.

The key to the success of a Recovery College is peer support workers. Their job is to create hope, control and opportunity for students of the college, in order to allow them to develop their own expertise in their own recovery. It is about creating a route to recovery from mental illness, rather than a form of therapy.

The Recovery College has managed to obtain funding from the Department for Work and Pensions. The philosophy is that public services are best delivered “with and not “to” people. This requires a shift from the idea of “fixers” to that of “enablers”.

So far, the Recovery College has run 70 courses, involving 600 students. 84% of students attended after enrolment, and 82% of these attended the full course. This is an impressive achievement, and evidence that the Recovery College is providing what service users actually want and need.

The average number of students per course was 7, which was felt to be a good size for participants to feel comfortable. The courses range from half a day to six weeks in duration.

The rest of the presentation was devoted to two service users. First of all was the extraordinary and inspiring Iris Benson, who eloquently and movingly told her own story of recovery against incredible odds. She is an expert by experience. She even had good words to say about the social workers who had helped her during her recovery, describing them as engaging, facilitating, supporting and encouraging.

She stressed the importance in the success of the College as being co-production, co-facilitation and co-delivery of courses, involving both professionals and service users.

Equally extraordinary was Wayne Ennis, another service user, who spoke about his experience of peer support: “You have the answers in yourself”.

David Hewitt was the next speaker. David is a Mental Health Tribunal judge, and also author of The Nearest Relative Handbook. He spoke of Deprivation of Liberty: Is it the start of a service user journey of recovery?

He stressed that as far as the Deprivation of Liberty Safeguards are concerned, there is still a great deal to be done. He examined the recent Supreme Court judgments relating to Cheshire West et al, looking at what this decision establishes, but also what it leaves unsaid. There is still a need for greater clarity. He expressed some concerns about the “acid test” posited by Lady Hale in the judgment, although he felt that overall the judgment had assisted clarity.

[Lady Hale stated: “it is axiomatic that people with disabilities, both mental and physical, have the same human rights as the rest of the human race. It may be that those rights have sometimes to be limited or restricted because of their disabilities, but the starting point should be the same as that for everyone else.” Deprivation of liberty happens whether or not the person is aware of it.]

He also quoted Lady Hale as saying that “DOLS have the appearance of bewildering complexity”, a sentiment with which most who have to grapple with it professionally would agree.

 

David posited that change is the overall determinant, suggesting that change surely cannot be determined when deciding deprivation of liberty. He gave the example of 2 people in a care home. One came from their own home, while the other came there from a high security unit. Comparative to their backgrounds, one was in a more restrictive environment, while the other was in a less restrictive environment. However, the environment they were in was identical.

[However, there is already a challenge to this. On 18th November 2014 Justice Mostyn took issue with the Cheshire West judgment in a Court of Protection judgment [2014] EWCOP 45. He found it “impossible to conceive that the best interests arrangement for Katherine, in her own home, provided by an independent contractor, but devised and paid for by Rochdale and CCG, amounts to a deprivation of liberty within Article 5. If her family had money and had devised and paid for the very same arrangement this could not be a situation of deprivation of liberty. But because they are devised and paid for by organs of the state they are said so to be, and the whole panoply of authorisation and review required by Article 5 (and its explications) is brought into play. In my opinion this is arbitrary, arguably irrational, and a league away from the intentions of the framers of the Convention.”]

David discussed the case of Munjaz v. Mersey Care Trust, which dealt with issues of “residual liberty”. He posed the greater question, what is liberty? And who says what liberty is? There is an assumption that we can all agree what liberty is or is not, but this is not actually true.

David suggested that a law cannot be a law unless a citizen can regulate their conduct according to the requirements of that law, and cited the case of HV V.UK 2004, which concluded that any law should be sufficiently precise to allow the citizen to foresee the consequences of their actions. He appeared to be suggesting that the Cheshire West judgment, and DOLS, does not meet that requirement.

And on that bombshell, I will end this segment. The concluding part of my review will come in the next few days. (There was, as always, a huge amount of fascinating content).

Worcester v Essex: Not a Cricket Match, But Another Dispute about Sec.117 Aftercare

Oh look, here’s yet another case of local authorities taking each other to court over who is responsible for funding Sec.117 aftercare. This is very recent, published on 29.10.14.

Why are local authorities prepared to spend thousands of pounds on legal fees in such cases? The simple answer is that the cost of aftercare for these patients can be extremely expensive.

Take this case, [2014]EWHC 3557 (Admin), as an example.

The dispute between Worcestershire and Essex centred around a young woman known as VC. She had an acquired brain injury at the age of 5, and this resulted in serious behavioural disturbance. As a result, she was accommodated in a range of establishments provided by Worcester. These included living for 2 years in a small home for young people up to 18. Although the home was intended to have four residents, VC was so disruptive that all others were moved out and she remained with up to 7 staff looking after her alone.

Her care was obviously costing Worcester a great deal of money.

She was then moved to Oaktree Manor, a hospital in Essex for people with learning difficulties. Although she was initially admitted as an informal patient, she was subsequently detained under Sec.2 after her behaviour deteriorated, and then under Sec.3. She remained detained under Sec.3 for nearly a year.

Worcester then decided that her residence of a few days as an informal patient at Oaktree priory to her detention under the MHA meant that Essex therefore had responsibility for Sec.117 aftercare.

Essex were not happy about this. They tried to argue that, although she had been deemed to have capacity to accept informal admission, she did not in fact have capacity, and therefore the placement was illegal. And Essex would not therefore be responsible for Sec.117 aftercare.

However, the Judge concluded:

“The context and purpose of s117 point in my judgment to an interpretation that is as straightforward as possible, the residence of a person being prima facie the place in which he was in fact living eating and sleeping immediately prior to his detention.”

This was regardless of issues of capacity, and hung on the fact that at the time VC moved to the hospital there was no other place which could be regarded as her normal residence, as she could not return to any of her previous placements.

In this case, Worcester saved itself a great deal of ongoing expenses.

Those who have read my recent post, on the changes to Sec.117 imposed by the Care Act 2014, will already be wondering if this would change the outcome of this case.

The Judge in this case has anticipated this. He observes:

“The matters in issue in this case will not arise in future, because s117 has been amended by the Care Act 2014 to provide for a regime of long term responsibility of an authority, rather than one which may shift as a patient moves around the country.”

But he also observes that previous statute does not permit this interpretation in this case.

Will the Sec.117 changes to the concept of “ordinary residence” prevent these sorts of disputes in future? When so much expense is at stake, I wouldn’t count on it.

Anorexia: To Treat or Let Die? The Case of Ms.X

This very recent Judgment on a rather unusual, and I think, contentious case was published on 8^th October 2014.

Ms.X has a 14 year history of severe anorexia nervosa, complicated by also having alcohol dependence syndrome which had caused chronic and irreversible cirrhosis of the liver. She has had many spells as an inpatient detained under the MHA when she has had forced refeeding. She currently has a BMI of less than 13.

The Judge states:

“The purpose of re-feeding an anorexic patient is to keep that patient alive whilst psychotherapy, talking therapies, can be facilitated in an endeavour to investigate and treat the underlying anorexia; this has been shown over many years not to work for Ms X.  So it is that the medical professionals firmly believe that not only would in-patient treatment once again involve painful, invasive and wholly unwelcome procedures for Ms X, but it would be pointless in terms of achieving long-term treatment, and would be likely in their view to intensify her consumption of alcohol on discharge from hospital, thereby actually increasing her mortality, and accelerating her demise.  As it is, the doctors opine that her life expectancy is measured in months.”

As a consequence of this poor prognosis, Ms.X’s mental health trust went to the Court of Protection to obtain the following declarations:

“i) It is not in Ms X's best interests to be subject to further compulsory detention and treatment of her anorexia nervosa, whether under the Mental Health Act 1983 or otherwise, notwithstanding that such treatment may prolong her life.

ii) It is in her best interests, and shall be lawful, for her treating clinicians not to provide Ms X with nutrition and hydration with which she does not comply.”

The medical evidence indicates that Ms.X suffered extensive childhood trauma. Both her eating disorder, and her dependence on alcohol, probably arose as coping strategies to deal with these early traumatic life events. The evidence submitted to the Court states that she is extremely resistant to the idea of any psychological talking therapy, and that as soon as she is not detained in hospital, her drinking and eating behaviours recommence.

All the medical evidence obtained by the Judge came to the same conclusion: that is was no longer in the patient’s best interests to be forced to undertake medical treatment, even if that treatment was intended to prolong life.

The Judge referred to a 2013 Supreme court case, Aintree University Hospital NHS FoundationTrust v James, and quoted Baroness Hale as saying: "The starting point is a strong presumption that it is in a person's best interests to stay alive … this is not absolute. There are cases where it will not be in a patient's best interests to receive life-sustaining treatment”.

Applying that principle, the Judge concluded in this case: “I have reached the clear conclusion that I should not compel treatment for Ms X's anorexia.”

What are we to make of this?

I certainly have severe concerns about the implications of this judgment, not just for Ms.X, but for others with chronic and difficult to treat mental disorders.

 

The case referred to in this judgment concerned a man, Mr James. He had developed an infection which was complicated by chronic pulmonary disease, an acute kidney injury and persistent low blood pressure. He was placed on a ventilator, and over a period of months had a stroke and recurrent infections.

Mr. James was essentially terminally ill. He had serious and untreatable medical conditions, and ongoing treatment would only serve to prolong life at the expense of quality of life.

 

Ms.X, on the other hand, although suffering from serious physical health problems, had a mental disorder, and it was this mental disorder that was the driving force behind her poor physical health.

 

A couple of years ago the Court of Protection considered another case involving a woman with anorexia nervosa. This was the case of E.

E had a Body Mass Index of less than 12. She was in a palliative care setting and was refusing to eat. She had a very long history of anorexia, and had had been subject to many treatment regimes over that time, with little or no success. She was at the point of death. The essential decision the Judge had to make was whether or not further life saving treatment against her will was in her best interests.

It was presented to the Judge that, although past treatment had failed, there was a prospect that long term treatment for her eating disorder and other underlying conditions had some prospect of success. The Judge concluded in this case:

“The competing factors are, in my judgment, almost exactly in equilibrium, but having considered them as carefully as I am able, I find that the balance tips slowly but unmistakably in the direction of life-preserving treatment. In the end, the presumption in favour of the preservation of life is not displaced.

I declare that E lacks capacity to make decisions about life-sustaining treatment, and that it is lawful and in her best interests for her to be fed, forcibly if necessary. I find that the resulting interference with E’s rights under Articles 8 and 3 is proportionate and necessary in order to protect her right to life under Article 2.”

Both these women had anorexia nervosa with very low body weight. While Ms X also had alcohol dependency problems, I don’t think these cases are sufficiently different in their nature to warrant the different conclusions reached: Ms.X was essentially to be allowed to die from the medical consequences of her mental disorder, while E would be forcibly fed if necessary in order to protect her life.

I have often written on this blog about the use of the MHA to save life, in cases of anorexia nervosa and with other mental disorders. Whether a patient lacks capacity or not, I still incline to the view that, at least in the case of people with mental disorder, legal powers should be used to save and prolong life, not to facilitate the ending of life.