EXECUTIVE SUMMARY

  1.  Rethink's submission to the Committee focuses on inequalities experienced by people with severe mental illness.

  2.  People with severe mental illness die 10 years younger due to poor physical health healthcare and have higher than average rates of conditions including diabetes, coronary heart disease, stroke, respiratory disease and some forms of cancer.

  3.  The health inequalities agenda has moved on from geographical inequalities to social inequalities in health. The next step is to recognise health inequalities experienced by other groups and address barriers.

  4.  The issues set out here support the following recommendations:

(a)  Non-social predictors of health inequalities, such as existing health condition, should be used to target those most as risk for screening.

(b)  The NHS cannot measure inequality of health outcomes unless data for specific disability groups is collated. This should be a basic requirement for true analysis of health inequalities.

(c)  Quality and Outcomes Framework funding formula should not disadvantage communities with high prevalence of chronic illnesses.

(d)  Some check of quality of practice under the Quality and Outcomes Framework is needed as delivery is not guarantee of good practice.

(e)  GP staff should be trained in mental health in order to provide a good service and avoid "diagnostic overshadowing".

(f)  NHS must employ good practice in sharing information with carers.

(g)  NHS needs to address implementation of recommendations made to Trusts and service through complaints and inquests.

(h)  Health promotion should also be targeted as generic messages are not always effective.

(i)  Health and social care services should be more joined up to be able to provide an individual care package to mental health service users and carers.

(j)  The NHS should be leading good practice in supporting staff and volunteers with mental health problems.

(k)  Changes to Department of Health policy must take into account the practical implications for individuals, as highlighted by expert stakeholders.

INTRODUCTION

  5.  Rethink, the leading national mental health membership charity, works to help everyone affected by severe mental illness recover a better quality of life. We were founded over 30 years ago to give a voice to people affected by severe mental illness and today, with over 7,800 members, we remain determined that this voice will continue to be heard. We help over 48,000 people every year through our services, support groups and by providing information on mental health problems. Our website receives almost 300,000 visitors every year.

  6.  Our knowledge of health inequalities comes from cases dealt with by our National Advice Service, our 8,000 members and our services. Our National Advice Service reports an increase in the number of cases of health inequalities.

  7.  At least, 630,000 people have a severe mental illness in England. People with major mental health problems are more likely than other citizens to develop particular significant health problems, and to develop them at a younger age.

—  31% of people with schizophrenia and Coronary Heart Disease (CHD) are diagnosed under the age of 55, compared with 18% of general population.

—  41% of those with schizophrenia are diagnosed with diabetes under the age of 55, compared with 30% of others with diabetes.

—  21% of those with schizophrenia who have a stroke are under 55, compared with 11% of others who have a stroke.

—  23% of those with schizophrenia and respiratory disease are diagnosed under the age of 55, compared with 17% of others with respiratory disease.[298]

  People with severe mental illness are also likely, once they have developed physical health problems, to die more quickly than other citizens.

The distribution and quality of GP services and their influence on health inequalities, including how the Quality and Outcomes Framework and Practice-based Commissioning might be used to improve the quality and distribution of GP services to reduce health inequalities.

  8.  The inclusion of annual health checks for people with severe mental illness in the QOF is an important and welcome step forward. However, we now need to ensure that these checks are of the quality required. Our concern with the Quality and Outcome Framework approach is that "outcomes" are not measured according to the final outcome of the patient. The quality of delivery of the services offered under this framework is not measured. We have had feedback that health checks may take only 10 minutes, with the result that emerging health problems are missed.

  9.  Rethink has dealt with many cases, and often receives information from members, regarding discrimination against patients with mental illness. There is a clear tendency for their health concerns to be dismissed as manifestations of their mental ill health, a practice known as "diagnostic overshadowing". This is absolutely unacceptable. Mental illness does not mean that a patient is not intelligent or informed. This kind of discrimination can have tragic consequences for some, but can lead to serious inequality in health and access to services for many. Service users consistently identify stigma as an impediment to their overall health and well-being[299] and access to services[300].

9.1  "On one occasion I could tell my GP was dismissing my concerns about having developed stomach pain. When I told him I was worried that I might have a stomach ulcer. He appeared to think I was being a hypochondriac. It eventually transpired that an antibiotic he had prescribed had reacted badly with my medication and caused acute stomach pain. On another occasion I'd been referred by my GP to an orthopaedic surgeon because of long-standing complaints about excruciating sciatic pain. I saw the confidential letter he wrote to the consultant. In it explained that he was only really referring me because he thought I might `have a breakdown' if I wasn't referred for treatment, the implication being it was `all in my head'."

  10.  An important GP quality issue is that of competence in dealing with mental health. Rethink is aware of GPs who may have had only 1 day of training provided, despite the fact that 1 in 4 people with experience mental health or behavioural problems at some time in their life. This leads to some of the most crucial issues in health inequality for those with a mental health diagnosis. We would like to see improved staff training, explicitly to reduce the risk of "diagnostic overshadowing", Clinicians need to be encouraged to have a greater level of suspicion about physical ill health in someone with severe mental illness.[301] One of our members reports that:

10.1  "I am still conscious of being treated first and foremost as a mental health patient, rather than just a patient. This worries me, as I feel they give less attention to my physical needs than they would otherwise. For example, I suffer from asthma/and or chronic obstructive airways condition. My surgery has an asthma clinic, and yet I am not asked to attend."

10.2  "When I first registered they treated me as a worthwhile human being, a credible carer who they had had contact with many times over the years due to my caring role for both my parents. Then, without doubt, as soon as they were in receipt of my "fat" psychiatric notes, everything changed. I think they are scared of dealing with me & I always feel unwelcome. I am patronised, they don't want to know what I think about my problems or treatment. I am treated as if I making an unnecessary fuss, as if I too demanding, they dismiss my many physical health problems instead of offering investigation or reassurance & have sent me away feeling like a worthless nuisance. I have felt suicidal many times recently but I would not pitch up at that practice if they were the last place on earth. I really do believe it will be as a result of me not having the comfort of a good relationship with my GP & feeling unable to pitch up to see them during times of crisis that ultimately I do not feel able to continue my life."

  11.  Unlike other QOF registers, people with severe mental illness have to consent to be on a "register", without requiring primary care practitioners to provide full information or reassurance about the nature and purpose of these checks. This means that those who are most ill and perhaps most paranoid and worried by the health care system are least likely to give consent and participate, a perverse outcome. We have heard of some areas of good practice, with practices organising face-to-face meetings with patients with severe mental illness to explain the health checks.In 2004, Rethink, together with the National Institute for Mental Health in England, produced a leaflet entitled "Getting more from your GP practice". 200 000 copies of this leaflet were produced in summer 2004. More initiatives like this to inform people of the value of attending a health check and allay the fears of both people with severe mental illness and carers are needed. The QOF should allocate extra points to promotion of the health check among the target group.

  12.  We are encouraged that the QOF was amended in the most recent GP contract to include lifestyle advice within health checks for people with severe mental illness. Up until then, there was evidence that GPs were unlikely to give "lifestyle" advice to people with mental illness.[302] Rethink is encouraged that the QOF review team took evidence from Rethink about this need and acted upon it.

  13.  The QOF needs to be further updated to include within the annual health check should a glucose intolerance test for everyone with severe mental illness. Diabetes is a growing problem in the Western world, which is associated with obesity and early death. Rates of diabetes are up to 5 times higher among people with severe mental illness than in the general population and contribute to people with severe mental illness dying 10 years younger than others due to physical health problems. Diabetes is highly prevalent among people with schizophrenia, but most remain undiagnosed in the community. (Holt, Journal of Psychopharmacology 2005; 19(6) Supplement 56-65), with prevalence at least 2-3 times that of the background population (Lamberti et al., Prevalence of diabetes mellitus among outpatients with severe mental disorders receiving atypical antipsychotic drugs, Journal of Clinical Psychiatry 2004 May;65(5):702-6;). People who take psychiatric medication can experience diabetes even where they have a low mean BMI (Emsley R, Turner HJ, Schronen J, Botha K, Smit R, Oosthuizen PP: Effects of quetiapine and haloperidol on body mass index and glycaemic control: a long-term, randomized, controlled trial. Int J Neuropsychopharmacol 8:175-182, 2005), hence people with schizophrenia should be screened for diabetes regardless of BMI, sometimes used as a predictor of diabetes in the background population. There seems to be a particular association with clozapine (Lund BC, Perry PJ, Brooks JM et al Clozapine use in patients with schizophrenia and the risk of diabetes, hyperlipidemia and hypertension: a claims based approach, Arch Gen Psychiatry 2003; Gianfrancesco FD et al Differential effects of risperidone, olanzapine, clozapine and conventional antipsychotics on type 2 diabetes: findings from a large health plan database. Journal of Clinical Psychiatry 2003; 63: 920-930) and olanzapine (Wirshing D A, Spellberg BJ et al Novel antipsychotics and new onset diabetes, Biological Psychiatry, 1998: 44; 778-783(6)).

  NICE recommends that primary care professionals regularly monitor physical health (National Institute for Clinical Excellence, Schizophrenia full national clinical guideline on core interventions in primary and secondary care, Gaskell and British Psychological Society 2003; 97, 146).Yet the health needs of people with learning disabilities and/or mental health problems are often "off-loaded" onto specialist services rather than addressed through regular primary care (Samele C, Seymour L, Morris B, Central England People First, Cohen A and Emerson E, A formal investigation into health inequalities experienced by people with learning difficulties and/or people with mental health problems 2006, Area Studies report).

  14.  Access to treatment and services is also regularly denied when carers or relatives seek help on behalf of someone with mental illness. Rethink carried out research with SDO to develop policy guidance[303] on this issue, which would be useful for GP practice. As part of this SDO project work, a survey of 214 mental health carers was carried out. 44% of mental health carers said that "confidentiality" has been cited as a reason that health professionals cannot share information with the carer. Where carers ask professionals to provide better physical healthcare or report a physical health problem, this should be taken seriously. Misuse of confidentiality can have serious consequences:

—  16% of carers are not being involved or listened to where their involvement could have made a difference in terms of outcomes for the service user.

—  14% said the person they care for had been affected through delayed access to help or loss of social support.

—  12% of carers said that the person they care for had been discharged from hospital without the carer's knowledge or support.

  Carers can have an important role in ensuring that people with severe mental illness access physical health services and report physical health needs. Yet, 31% of carers lack the information and knowledge they need to support them in their caring role.

  15.  The point about discharge without informing family is particularly worrying as this can leave the patient highly vulnerable. This is a Trust rather than a GP service quality issue, but we believe that this is a key issue for health inequalities as highlighted by the tragic case of Steven Hart:

Steven's condition remained deeply disturbed for the whole of 25 September, but by the following day he appeared to have stabilised, and sought to discharge himself. No transport could be arranged immediately and Steven chose to leave, though he asked a nurse to show him the way out as he could not read the signs to the hospital exit and could not remember his admission. He was discharged at 12.30pm, with no money, no transport and without his family being informed.

Thereafter a total of four 999 calls were made by members of the public who observed Steven's strange behaviour, lost and vulnerable, wandering apparently in circles trying to find a road home. Calls around 8pm, by which time it was dark, led to a police officer giving Steven a lift to the A61 road to Ripon and Harrogate at its intersection with the A1. Steven set off again on foot but was observed some twelve minutes later retracing his steps over the A1 once more, and within a further four minutes observed on the A1 itself by a concerned motorist who rang 999, walking southbound down the fast lane of the northbound carriageway. Less than an hour later, having removed his clothes, he was run over in a similar position and killed.—Inquest Press Release, 15th October 2007.

  16.  Inquest and complaint investigations do at times result in clear recommendations being made to the NHS Trust or service. There is, however, no duty on Trusts or services to implement these recommendations, despite the resource invested in finding systemic failures. This should be a basic requirement—to address specific practices which would likely protect others from the same risks to their health and wellbeing in the future. In one case investigated by the Healthcare Commission, a young man with severe mental illness was being treated with clozapine. People using this medication should be given regular blood tests as there is a strong association between clozapine use and diabetes.[304] Blood tests were not offered until the mother of the man intervened and made multiple requests to the Trust in question. By the time this was done, the young man had already developed diabetes. When the Healthcare Commission investigated, it found that the clozapine clinic which should have been running to carry out these tests was, in fact, not running. A year later, when the mother asked staff at the Trust about what had happened as a result of the Healthcare Commission investigation, staff had no knowledge of the recommendations about clozapine clinics and nothing had actually changed.

  17.  There are clear relationships between social disadvantage (poverty, unemployment, BME, poor housing, social exclusion etc.) and severe mental illness. It is essential that GPs serving areas with high incidence of these issues are properly resourced. We share the concerns of the NHS Confederation that the Quality and Outcomes Framework formula disadvantages GP surgeries with high prevalence of particular conditions.

The effectiveness of public health services at reducing inequalities by targeting key causes such as smoking and obesity, including whether some public health interventions may lead to increases in health inequalities; and which interventions are most cost-effective;

  18.  Health inequalities are not determined by social demographic alone, and should not ideally be measured in terms of geographical comparison. There are in fact health factors which can predict further health inequality, such as mental illness.

  19.  Inequality of health is a major issue for people with mental illness. The 2006 Disability Rights Commission report on health inequality[305] cites evidence that people with major mental health problems are more likely than other citizens to develop particular significant health problems, and to develop them at a younger age.

  20.  We are disappointed that the NHS did not heed the advice of the Disability Rights Commission on measuring health outcomes by disability to counter these inequalities. It is essential to be able to identify groups at particular risk to health inequalities, and consider taking measures to do so a basic necessity.

  21.  Predictors of health inequalities, such as mental illness diagnosis, should be made use of through screening vulnerable groups. There is a higher incidence of smoking, obesity, diabetes, stroke, CHD, respiratory problems and some form of cancer in people with mental illness. We emphasise the importance of the routine screening of this group to identify health problems as early as possible.

  22.  Rethink has developed a Physical Health Check tool for a range of health professionals to screen for physical health problems. This is a simple and cost effective method to prevent health inequalities, improve quality of life and life expectancy of this group. It can be used in a variety of settings by different professionals, eg in prisons, in community mental health services, in inpatient wards. Such remedies are essential to counter the lack of knowledge of many mental health professionals about physical healthcare and ensure that referral to specialist physical health professionals for treatment.

  23.  It is also important to consider targeting key audiences in health promotion. Evidence suggests that general health promotion campaigns are not effective for people with mental illness—they do not respond because they feel that they are "not for us"[306].

The success of NHS organisations at co-ordinating activities with other organisations, for example local authorities, education and housing providers, to tackle inequalities; and what incentives can be provided to ensure these organisations improve care

  24.  Co-ordinated support is essential for people with mental health problems, and the NHS should be looking at joining up more effectively with local authorities. It is essential for health services to play some role in encouraging and supporting people with mental health problems into appropriate work. We are encouraged to hear that there are plans to start employment services into GP surgeries. This is particularly important for people who are not in contact with secondary mental health services, and may be seeing only their GP for regular treatment.

  25.  The NHS should also be developing links with the Department of Work and Pensions departments: Disability & Carers Services and JobCentre Plus. Increased knowledge of the processes around benefit claiming, especially those relating to medical assessment and exemptions from this, would be highly beneficial. The onus is often on the individual to ensure that information is shared effectively between health professionals and DWP, which means that those who are ill at the time are the most vulnerable.

  26.  Carers of people with severe mental illness can also experience health inequalities. 1 in 4 mental health carers provide more than 50 hours per week care, and this, combined with emotional stress, can have a significant impact on their mental and physical health.[307] It is essential that health service identify carers and refer them for their own needs assessments by local authorities and to local services, such as respite care.

The effectiveness of the Department of Health in co-ordinating policy with other government departments, in order to meets its Public Service Agreement targets for reducing inequalities

  27.  The Department of Work and Pensions aims to move those who are able off benefits and into work through the Pathways to Work programme. There is also a PSA (16) to increase the number of people with mental illness in employment. One of the greatest barriers to employment is not unwillingness on the part of the individual, but stigma and discrimination and a lack of understanding on the part of employers. Unfortunately, the NHS perpetuates this stigma through inconsistent practice in employing paid workers and volunteers with mental health problems.

  28.  Rethink has received reports of people with mental illness being told they pose too great a risk to work within the NHS, based on their diagnosis alone, with no attempt made to support them in the role.

"As I have applied to become a volunteer at four different NHS hospitals and all four declined to take me on—first they accepted me, but as soon I as informed them I had a mental health difficulty- straight away they decided not to take me on. They claimed I posed a threat to the public- because of my mental health difficulties. Though I have never committed any crimes or acts of violence against anyone, they used my mental health difficulties against me. I can't believe that NHS hospitals responsible for protecting patients would deliberately go out of their way to discriminate against mental health patients."

  29.  The NHS is one of the largest employers in the UK, and should be leading the way in good practice for developing opportunities for work and volunteering for socially excluded people. In fact, as a public body, the NHS should be adhering to Disability Equality Duty, which obliges them to develop plans to address issues such as this, and to evaluate progress. These top level policies must then translate into local practice through staff training.

  30.  Rethink is particularly concerned by the development of the plans to abolish standard level Care Programme Approach (CPA). The consultation process for this was poor—with limited information shared with stakeholders, and a disregard for expert views.

  31.  There has been an apparent disregard also for the impact of removing standard CPA on related policy, especially where CPA is cited as criteria for eligibility for a service or identification of a group targeted by government spending. People with severe mental illness have been identified specifically for the first time in the recent Comprehensive Spending Review and we are concerned that people losing standard CPA will not be counted amongst this group. It was also not made clear whether people being removed from CPA will now be under the care of their GP, and what is being done to support or resource GPs to do this.

  32.  We are highly concerned that loss of standard CPA will result in more "missing people".. Already, about 50,000 people with severe mental illness are living in the community without any specialist support.[308] For people with mental illness, this could mean more people finding themselves part of this "Forgotten Generation". They may be medically stable under care of their GP, but losing CPA may mean access to social care and support and further social exclusion. This group are sometimes referred to as being "seldom heard", but we would argue they are seldom listened to.

January 2008

299   Mental Health Foundation (2000) Strategies for Living. Back

300   ODPM (2004) Mental Health and Social Exclusion, HMSO. Back

301   Disability Rights Commission (2006) Equal Treatment: Closing the Gap. Back

302   Hafal/MDF/Primhe/RCN/SANE (2005) Running on Empty. Back

303   SDO Department of Health (2006) Sharing mental health information with carers: pointers to good practice for service providers. Back

304   (Lund BC, Perry PJ, Brooks JM et al Clozapine use in patients with schizophrenia and the risk of diabetes, hyperlipidemia and hypertension: a claims based approach, Arch Gen Psychiatry 2003. Back

305   Disability Rights Commission (2006) Equal Treatment: Closing the Gap. Back

306   Friedli L, Dardis C, Not all in the mind: Mental health service user perspectives on physical health, Journal of Mental Health Promotion 2002:1; 36-46. Back

307   Under Pressure, 2003, Rethink. Back

308   Lost and Found, Rethink 2004. Back