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A check-up on mental health Report comparing mental health services in Wales with international mental health comparators
Dr Ian Johnson Report commissioned by Helen Mary Jones AM Assembly Member for Mid and West Wales and Plaid Cymru Shadow Minister for Health and Social Services through the National Assembly for Wales Policy, Research and Communications Fund
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Contents
01 Executive summary of recommendations 02 Introduction 03 Mental health 04 Adult mental health services 05 Comparing CAMHS internationally 06 Welsh language services 07 Services in languages other than English 08 Combined services 09 Overall strategies 10 Women's mental health 11 Men's mental health 12 Further issues for consideration
12.1 Experts by experience 12.2 Carers 12.3 Eating disorders
13 Conclusions
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Executive summary of recommendations • As a high-income country in northern Europe, Wales has one of the highest performing mental health services, based on the recognition of mental health as a priority health issue, cultural understandings of the breadth of issues, and overall investment. However, there are insufficient outcome measures to evidence success, especially in the face of growing awareness of mental health problems. • Wales spends a greater percentage of its healthcare spend upon mental health services than international comparators. However, this also reflects that Wales spends less per head of population on healthcare than those same comparators. • Wales has fewer beds allocated for mental health services compared with comparator countries for both adults and young people. Use of those beds is close to capacity, above the optimal levels suggested by the Royal College of Psychiatrists. • Although there has been an increased focus on child and adolescent mental health, in particular specialist CAMHS, the requirement for supporting the ‘missing middle’ remains – both in terms of providing support for those in need and reducing problems amongst those not suffering from longer term trauma challenges. • The paper raises concerns about the size of the specialist workforce in Wales compared with other comparator countries, Scotland in particular, and the relatively small number of community contacts. However, it also recognises that Wales performs well in contacting and providing support to those in high levels of need. • It is important to have high quality data on outcomes rather than inputs, as we cannot make the assumption that inputs are a good proxy for successful treatment.
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Introduction This report investigates international best practice in mental health treatment, making suggestions and proposals to improve treatment outcomes in Wales. This is a first stage report, setting out Welsh data in an international context, focusing primarily on specialist services. The nature of international benchmarking is that, because of the need to draw valid comparisons, the data may have a slight lag compared to most recently published information. However, this paper aims to use the available snapshot data to broadly assess Wales’ performance in the field of mental health against a series of international comparators, asking further research questions where appropriate.
Dr Ian Johnson August 2019
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Mental health Mental health is a broad term which encompasses an individual’s overall wellbeing. Recent years have seen an increased interest in mental health with a modern understanding that individual mental health sits on a continuum and is a variable state, with treatment required or offered to individuals suffering from prolonged poor mental health or whose mental health can be volatile, leading to crises and impaired decision making capabilities. The World Health Organisation (WHO) Mental Health Atlas 2017 gives a global overview of mental health support as part of the monitoring of the 2013-2020 Comprehensive Mental Health Action Plan. Although the results show internationally positive improvements in raised governmental awareness and investment in tackling mental health, it also shows substantial variation in implementation of mental health support. The Mental Health Atlas reports in its key findings that levels of investment in low and middle income countries is meagre and the majority of this goes to mental hospitals, and that although the median number of mental health workers per 100,000 population is 9 people, this varies from one per 100,000 for low income countries to 72 per 100,000 in higher income countries. Similarly, the Mental Health Atlas notes that the median number of mental health beds per 100,000 of population rises from seven for low and lower-middle income countries to over 50 in higher income countries, and that equally large inequalities exist for outpatient services, child and adolescent services and social support. In this context, as part of the UK and a higher income country in WHO categorization, Wales is globally within the higher investment bracket in terms of mental health treatment and support. On the basis of this, it is assumed that comparator countries for Wales, and those which may provide examples of best practice, are most likely to occur within countries with similar economic and cultural environments which hold similar conceptions of mental health. Broadly speaking, these are countries within north-west Europe and the international Anglosphere. The Organisation for Economic and Cultural Development (OECD) focuses on the ‘costs’ of poor mental health, suggesting that the EU28 countries cumulatively lose out on 4% of GDP, around 600 bn Euro,
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Mental health on an annual basis due to costs of direct healthcare spending, social spending to support those too unwell to fully participate in the labour market and indirect costs relating to lower economic output and productivity. Harder to determine metrics, such as the impact upon individuals, family life and society are less well researched, but this paper takes the position that quality of life and ability to enjoy a daily life routine to the greatest possible extent should be considered an integral part of human existence, irrespective of economic considerations. The exact number of people suffering from poor mental health is unknown. It is commonly said in the UK that one in four people suffer from poor mental health at any one time, based on the findings of the 2007 Adult Psychiatric Morbidity Survey in England. However, this was revised to around one in six of the population in England (17%) meeting the criteria for a Common Mental Disorder after the findings of the follow-up 2014 Survey were published. Although an England-only survey, there is a presumption that this applies to the population in Wales, with no significant difference. Examining the social determinants of poor mental health, it could be anticipated that rates in Wales might be slightly higher due to the more precarious nature of socio-economic existence within Wales. The English study suggested that women were more likely to report Common Mental Disorder symptoms than men, at a rate of approximately 19% to 12%, and more likely to report severe symptoms – 10% compared to 6%, according to Digital NHS. This is in line with findings of the 2014 Wales Health Survey, the final publication in its series, which reported that 13% of respondents attended their GP surgery related to a mental health concern, of which 16% were women and 10% men.
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Adult mental health services The NHS Benchmarking Network have collected metrics from 14 countries to draw comparisons and examine methods of working in both adult mental health services and child and adolescent mental health services (CAMHS). The findings of these were discussed at an international symposium in May 2018. Participating countries were drawn from the International Initiative for Mental Health Leadership and the OECD. Data from that event has been summarized below, with selected graphs highlighting information of particular interest. Further information is available from the NHS Benchmarking Network. Of the participating countries for which data were available, expenditure on adult mental health services per person was third highest in Wales, a little over $300 USD per head. This was greater than UK comparators, but much lower than the highest expenditures in the Netherlands and Sweden. Wales and Scotland had the highest percentage of mental health spending against overall health expenditure, with 11% of their total spend being used for mental health services. In 2017-18, the most recently available financial year on StatsWales, mental health spend in Wales was ÂŁ746m, approximately ÂŁ239 per head of population. This represents almost 5% of total Welsh Government expenditure for the year.
Reflecting the move towards community settings and away from institutional support, Wales data showed the lowest number of inpatient beds for mental health services, with fewer than half of the median number of beds. The average length of stay (excluding leave beds) was a little above average, whilst Wales has an average number of detentions as a percentage of admissions, when compared with other countries.
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Adult mental health services The Royal College of Psychiatrists recommend that 85% occupation is an optimal use of beds, as this enables admission to a local facility where social support networks can remain available and allows leave without the loss of a bed place. Delays to admission may impact upon short- and long-term health. According to the comparative figures, Welsh bed occupation is above 100% when leave days are included. Wales has an emergency readmission rate of 11%, in line with the median average amongst participants.
In terms of older age psychiatric beds, Wales has an approximately average number of beds and admissions per 100,000 people, but the longest average stay, at 78 days compared with an average of 54 days. Bed occupation for older people was around 90%. Wales has an average number of beds per 100,000 population maintained for dedicated forensic support for service users with a history of serious offending, have been referred by the criminal justice system or are a high risk to themselves. Wales has fewer beds than England and Scotland. Wales has the lowest specialist mental health caseload per 100,000 people at 1,415, the lowest number of patients on their books than comparative services in other countries of the five countries for whom community services data was available and robust. Contacts per 100,000 population were also substantially lower. The report notes that 97% of mental health service users across the UK are supported in the community. Wales was the best performing of the comparators for post-discharge follow-up, with 94% of patients receiving community-based follow-up after being discharged from an inpatient facility.
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Adult mental health services In terms of workforce, Wales has a median number of specialist mental health workers, including mental health nurses and consultant psychiatrists, but this is less than half of those in Scotland. Wales reported the lowest level of consultant psychiatrists, alongside Northern Ireland and England. Numbers in Sweden were five times greater than in Wales, and in Canada four times greater.
Suicide outcomes suggest that Wales is at the median level amongst the comparator countries, but higher than England and the Netherlands which have the lowest rates. The report notes that, across the UK, only 26% of suicides are by people with recorded contact with mental health services, and so should not necessarily be considered a marker of success or otherwise of those services. Further considerations • Wales appears to perform well at supporting those at highest levels of need but appears to have fewer community contacts than comparator countries. Can the latter be expanded without reducing the impact of the former? • The average length of stay for older age psychiatric beds is much higher in Wales than comparator countries. Are there good reasons for this and how have we arrived at this situation? • Welsh specialist workforce numbers appear much lower than Scotland, Sweden and Canada. Does this impact upon effectiveness and outcomes?
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Comparing CAMHS internationally The NHS Benchmarking Network report on CAMHS conducted initial literature reviews of international comparable data which uncovered a limited amount of useful data for CAMHS, and, they report that, as the project was undertaken, it became clear that there were also frequent data quality issues raised. Wales performs poorly compared to other high-income countries in this data. Wales, jointly with New Zealand, has the fewest number of young people’s mental health beds per 100,000 population. Wales has four, compared with 31 in Belgium, and between eight and ten in the other UK nations.
Perhaps related to the availability of beds, Wales has the fewest admissions – 13 per 100,000, half that of the country with the next fewest, the Republic of Ireland, at 26. Across all participating countries, the median average is 116 and the mean average is 105. In community care, Wales reported seeing 2,000 children per 100,000 within community CAMHS, fewer than half as many as were seen in Scotland and England. Community CAMHS contacts, including face to face and non-face to face, were a little over 10,000 in the year for Wales, compared to almost 60,000 in New Zealand and 40,000 in Sweden. England and Scotland were both a little under 20,000.
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Comparing CAMHS internationally
Workforce comparators showed New Zealand and Sweden with more than 100 members of staff per 100,000 relevant population while Wales was half that, at 52 members of staff. Scotland was an outlier within the UK with 96, compared to England at 60.
Although having the lowest number of clinical psychologists (except for the Czech Republic), Wales was not far from the mean and medium average. However, Sweden, with 18 per 100,000 population was three times the Welsh number, which was 6 per 100,000. Wales performs better on the numbers of staff on a per-bed basis, because of the small number of beds, as previously outlined. Although this study is of specialist services, the gaps in provision within preventative services have been discussed in depth by the ‘Missing Middle’ report published by the Children, Young People and Education Committee at the National Assembly for Wales. This points to the lack of available services for young people until they reach the threshold
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Comparing CAMHS internationally for specialist support. Further considerations: • Wales has far fewer beds per head of population compared with international and UK comparators, and high occupancy rates. Should this level of provision be reviewed? • The number of children seen with community CAMHS is much smaller than in comparator countries. What are the reasons for this? Is there sufficient capacity within our system? Is this why the ‘missing middle’ is missing?
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Welsh language services According to the 2011 census, almost one in five residents in Wales speak Welsh and, according to the Welsh Language Measure of the same year, duties should be set on bodies so that Welsh should be no less favourably treated than English. Irespective of legislation, an outcome-based perspective would recognise that service outcomes would be better in the language of the service users, and that they would prefer to receive services in the language of their choice. It is intrinsic the local health boards have a trained workforce who can provide services that reflect that language choice. The most obvious comparators for service delivery in more than one official language are bilingual areas within Canada. In those circumstances, research raises concerns regarding the impact of linguistic discordance between physicians and patients, where nuance and detailed communication can be of substantial importance in determining diagnoses and providing support to service users. The outgoing Welsh Language Commissioner has expressed concerns that local health boards and others do not provide an adequate active offer to service users so that they can receive services in the language of their choice. Service uptake in Welsh could be anticipated based upon the level of Welsh within the community, however workforce preparations do not necessarily follow that pattern, and so careful planning of language appropriate services is required across Wales. Further considerations: • What is the active offer for Welsh language services across all sectors (e.g. GPs, inpatient, psychologists, community mental health teams, third sector services)? • What systematic work is ongoing to ensure appropriate recruitment of sufficiently skilled workforce who can operate bilingually, including training and retention? • Are there lessons that can be learnt from comparison with, e.g. Franco-Ontarien services or those in New Brunswick, Canada, which due to their geography are also relevant to provision of rural services?
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Services in languages other than English As noted in the introduction to this paper, the understanding of mental health adopted in Wales is most commonly adopted within north-western Europe and Anglophone countries. In other countries and cultures there can be other understanding and different stigmas attached to the concept of mental health and mental health services. This means that there is a variety of presumptions behind mental health. There is a need for NHS local health board services to meet those needs within the community, rather than anticipate that individuals within differing communities will respond positively to the offer of services. Research by Mind Cymru on services in Wales for vulnerable migrants in particular, but also those within marginalized BAME communities, show that out-reach work is needed to ensure that the provision and purpose of mental health services is understood. Similar to the provision of Welsh language services there is the need to ensure sufficient support in languages other than English, which will be naturally concentrated in major cities where non-native English speakers are most likely to be present. However, Wales lacks the super-diversity and large networks that might be found in, say, London or in Toronto. Those cities might be able to provide best practice suggestions, but implementation may be more comparable with smaller cities, including, most locally to Wales, Bristol or Liverpool. Within Wales, Polish speakers are the most common linguistic group from outside Wales, followed by Urdu, Bengali, and Chinese. Wales also has noticeable substantial communities from Somaliland, Nepal and Kurdistan, as well as refugees and asylum seekers from Syria and other countries in recent years. Refugees and asylum seekers in particular may suffer from additional trauma resulting from conflict and (sexual) assault and may require longer and more intense support. Refugee dispersal areas lie across four of the Welsh NHS local health board areas whilst Syrian refugees live across the country. This shows the need to ensure implementation of best practice in all parts of Wales. Further considerations: • What processes are in place for knowledge transfer on the needs of
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Services in languages other than English refugees and asylum seekers? • To what extent can skills and experiences of community members be used to promote better mental health amongst their peers? • Are there restrictions due to stigma about mental health, the host community and target community, which act as barriers to participation in mental health support, including provision of support and translation where necessary? • How many specialists are trained to provide the intense level of support required for this group?
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Combined services Effective inter-agency collaboration is a key determinant of success in mental health recovery, but tensions have been a consistent factor in developing mental health schemes. Northern Ireland’s integrated structure for commissioning, management and provision of health and social care is presumed to be an advantage in these situations, due to a common working culture. Although improvements have been made with regards to shared or pooled budgets between local authorities and local health boards, including shared posts, working spaces and hubs where relevant, there remains an un-necessary duplication of roles and structures. Community mental health teams and local charities are perhaps more social-focused and person-centred in their aims than the more medical model usually ascribed to the NHS, but continuing to move towards common goals and common working culture could impact positively upon the patient experience and recovery, as well as removing points of tension, such as delayed transfers of care, bed occupancy rates and financial (dis)incentives to make certain decisions. More work is needed on how this could be successfully implemented in a Welsh context on a local health board footprint whilst maintaining transparency of decision making. The third sector has opportunities for innovation and small-scale pilot working that are less easily achievable in other parts of the health service. Working across GP clusters and local health boards, as well as Welsh Government and universities, there should be continuing workstreams that seek to push boundaries and innovate, with projects rolled out and scaled up as necessary. The relatively small size of Wales means that best practice can easily be replicated and adapted for other parts of the country, according to local need.
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Overall strategies The development and adoption of all-encompassing strategies is a key part of international best practice, setting out the goals for mental health policy within the country, setting performance indicators and governance arrangements to ensure that these are monitored and assessed, as required. In Wales, the ten-year Together for Mental Health strategy was launched in 2012, with a separate child and adolescent mental health strategy launched soon after, concluding in Autumn 2019. A report on progress in Together for Children and Young People was presented to the Children, Young People and Education Committee in June 2019. A new consultation on delivering the 2019-22 phase of the Together for Mental Health strategy is taking place during summer 2019. In Australia, the national plan for tackling mental health challenges has been updated and refreshed every few years since its inception in 1993. The country’s fifth national mental health and suicide prevention plan includes a diagram to show the progress and milestones along the way, alongside the aims and objectives of the current plan. Amongst others, these include better integration of planning services around patient need, improving the overall health of people with mental health problems and improving the safety of mental health services. Notably the current plan includes specific reference to the mental health and suicide prevention of Aboriginal and Torres Strait Islanders. Previous milestones mark changes in attitude towards mental health amongst service providers – including a move from process measurement to outcome measurement and strengthening accountability to service users. Good service delivery, decision making, and outcomes are dependent upon the collection and analysis of reliable data. As illustrated by the limited amount of international comparative data on mental health services, there is a general paucity of data surrounding mental health services. Following calls from the Wales Alliance for Mental Health (WAMH), there is going to be improved data collection within Wales, with Welsh Government looking to publish new datasets from 2022 onwards, and interim datasets, where available. However, this common dataset has already been much delayed. Improved data will hopefully illuminate patient pathways through the system, including commonalities of those entering the system in
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Overall strategies search of support, the most positive outcomes and lessons that can be learned to ensure better outcomes for patients, reduce re-entry and create sustainable and efficient services. Historically, the data collected has focused on waiting time for diagnosis or first treatment, and attention focused thereupon. This produces an underlying assumption that effective and successful treatment follows on from diagnosis and treatment and will lead to a successful outcome. This is clearly not the case, and the wait time for a diagnosis and treatment is simply the start of the process. Waiting time targets are, of course, to be welcomed – more so when they are met for everybody who requires support, but they should also recognise the difference between people who are in a crisis situation and need urgent support and people with substantial need, but where treatment are support are perhaps not so urgent. Appropriate patient pathways should be available for all people presenting with mental health concerns. Particularly within specialist CAMHS there have been a large amount of historical anecdotal evidence about ‘gatekeepers’ informing potential service users that they do not qualify for support because their particular symptoms are not considered serious enough for treatment and failing to refer onwards to appropriate support for their current position. This approach has led to frustration amongst young people in need, particularly if they have been waiting for support for some time. These concerns have been at the heart of the ‘Missing Middle’ complaints followed up by the National Assembly’s Children, Young People and Education Committee in their 2018 report. The same approach needs to be taken for adults, and involves GPs being aware of the different treatment routes and patient pathways when making a diagnosis, ensuring that their patients are similarly informed rather than adopting a fall-back pharmaceutical position. Successful treatment for mental health challenges requires a welltrained workforce who can give time and personal support. By its nature, this can be resource intensive in terms of workforce hours, and therefore costly in terms of investment. In an era of ‘prudent healthcare’, service users with fewer intensive needs are guided towards books or online support services which can reduce the call for service staff. Mind’s Active Monitoring programme, piloted in a number of GP clusters across Wales and intended for service users with mild to moderate symptoms, e.g. of depression or
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Overall strategies anxiety, produced good results for those who completed the course, but, of course, data does not exist for those who failed to attend or complete the 5 session programme.
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Women's mental health The experience of pregnancy and of bringing new life into the world is a major life event. Estimates of the number of women affected by perinatal mental health problems vary substantially between a relatively small number who suffer from postpartum psychosis to a large number of mothers who experience milder symptoms. The closure of the Specialist Mother and Baby Unit in Cardiff was followed by the development of alternative services across Wales. It has been argued that the maintenance of specialist services in Wales was not cost effective for the small number of patients, but in reports from 2017 it was said that, in a number of cases, mothers did not want alternative support in England because of the distance from their families and social support networks. It is also assumed that Welsh language facilities are unavailable in English hospital settings. Pilot mental health support through mother and baby groups, and ‘train the trainer’ sessions to scale-up support were created by Mind Cymru using Welsh Government s64 sustainable social services grant income. These were evaluated positively, including with non-English speaking mothers from the Polish immigrant community in Wrexham. These courses were intended to promote resilience for mothers or would-be mothers with moderate symptoms. It is increasingly recognised that a smaller number of men also suffer from forms of post-natal depression.
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Men's mental health It is recorded within the Wales Health Survey, which ran until 2014, and England’s Adult Mental Health Morbidities Survey, that men are less likely than women to present with mental health problems. It is unclear whether this is biological, and that men are less likely to have symptoms of poor mental health, or a social response in which factors align so that men are less likely to present with these symptoms. This can include ‘toxic masculinity’, the ‘boys don’t cry’ attitude in which displays of emotion or weakness are frowned upon, but also lack of familiarity with medical settings or a lack of emotional and mental health literacy which means that they do not recognise symptoms and seek help accordingly. Nevertheless, even though men are a smaller percentage of the population in presenting for support, they make up a substantial majority of successful suicides. In the UK, this is usually around threequarters of annual deaths by suicide (around 75%), but recently in Wales this has been as high as five-sixths (83%). Arguably this percentage has become skewed by a reduction in the number of women’s deaths through suicide following more stringent regulations on sales of pills which can be poisonous when taken in excess. Completed suicides by men are most frequent amongst young men and those in early middleage. A further uncertainty in men’s mental health is whether symptoms are being correctly interpreted and whether some men’s behaviours, particularly unexpected or increased anger or nihilism, may be a symptom of a mental health problem that is ignored because it doesn’t fit with traditional perceptions of people with depression or anxiety as being ‘quiet’ or 'withdrawn'. Considerations for improvement in men’s mental health may include promotion of mental health literacy in settings which are more traditionally male, normalizing discussion around mental health in non-medical settings and using family and friends, whatever their gender, to prompt support, particularly in what might be termed crisis points, including relationship breakdown and employment insecurity. For some men, the institutions and language associated with mental health may be a barrier to their seeking support. The institutional nature of Higher Education in particular can highlight poor mental health amongst young men, but it is likely that young men with low educational attainment, and resident within their community, are at greater risk of poor mental health due to their circumstances and limited opportunities, as well as less obvious support networks, particularly if they have been previously negatively labelled, for one of
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Men's mental health a variety of reasons. This means that improved provision of visible and non-judgmental support within communities is a necessity. Men are more likely to have been members of the armed forces, with psychological impacts from their training, participation in theatre and readjustment back into civilian society. Continued proportionate specialist support, perhaps over an extended period of time, is required to provide a safety net for these individuals and groups. Previous NHS pilot studies on PTSD amongst veterans in England and Wales identified that many veterans suffered following their experiences, but support was not always forthcoming. Engaging with veterans’ charities as well as the NHS, it makes sense to develop psychological support specifically aimed towards people with these experiences, separate from mainstream mental health support paths. Further considerations: • What can be done to increase men’s participation in activities around their own mental health, particularly those who might be at greatest risk of taking their own lives? • Which elements of mental health care and support can be better directed towards men’s mental health and help combat cultural trends and stigma towards mental health problems? • How can partnerships with veterans’ charities and other groups help lead to veterans-specific mental healthcare pathways?
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Further issues for consideration Experts by experience Service users who are currently or previously suffering from mental health problems are experts by experience whose voice should be clearly heard in designing or revising current and future services. There can be tensions between medical expert determinations and the experiences of service users. This makes communication important in individual interactions, as well at a more global level of reference groups of experts by experience service users who can provide feedback on service design. A focus on the service user experience can illuminate other issues than those from the medical gaze. This can include appropriately accessible locations for treatment because of the availability, or lack, of public transport, appropriate times for appointments to reduce the number of missed meetings or reminders of appointments, requirements or opportunities for peer support and social activities, and ensuring a more general person-centred service. Carers It is important to provide sufficient support to carers, for their own mental health but also in view of the savings that carers make for the NHS overall. Ensuring that carers are appropriately signposted to support services and have their own carers’ assessments can be a crucial building block in maintaining community care services. Carers support services are outside the scope of this paper but can impact strongly upon the delivery of mental health services. Eating disorders Recent years have seen increased focus upon mental health problems relating to eating disorders, including additional funding resulting from a political budget agreement. During 2018 a treatment review of services in Wales was carried out. The final report is yet to be published, but research from Swansea University suggests that 90% of diagnoses from GP data and in-patient hospital admissions are female, and that 6% of anorexia nervosa patients die within 15 years of diagnosis, being significantly more likely to die than control groups. More information is required on these services in an international context.
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Conclusions On a global level, Wales is one of the best performing mental health services, based on a clear cultural conception of mental health and investment. However, when compared with a cohort of mental health services in other high-income countries, services in Wales perform poorly on a number of indicators, particularly with regards to workforce, occupation of beds and community mental health contacts. On the basis of this information, further questions and considerations are recommended throughout the paper that can illuminate some of the published statistics and comparisons with the services provided by other high-income countries. Published mental health statistics are often geared towards measurable targets, e.g. waiting times or inputs, rather than towards outcomes. A shift in emphasis is needed so that support and treatment is recognised as person-centred and that the expert through experience is the person best placed to determine the success and effectiveness, or otherwise, of the treatment that they have received, in co-operation with those providing support. This will only ultimately be achieved through better dialogue with service users, and a continued drive for improvement within the mental health sector.
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Cyhoeddir gan Helen Mary Jones AC
Published by Helen Mary Jones AM
Cysylltwch
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