Person centred services

Published 19/12/2022 | Last Updated 19/12/2022 | Reading Time minutes

Connecting the dots: tackling mental health inequalities in Wales

This is the third chapter of the Health and Social Care Committee ‘Connecting the dots: tackling mental health inequalities in Wales’ report.

Person-centred services

Provision

41. Respondents to our consultation described a lack of provision across the spectrum of mental health needs, from early intervention through to specialist and crisis services. They also highlighted waiting times as a significant issue, as well as gaps in provision for particular groups including older people.

42. We also heard concerns about the extent of services available once people have been able to access them. The Genetic Alliance UK explained that people accessing counselling or therapy through the NHS may receive only six sessions, and added that for people living with rare physical or other health conditions much of this time can be needed to explain the condition itself.[71] The experience of a stroke survivor shared by the Stroke Association illustrates how damaging such limitations can be:

“I received six weeks of mental health therapy, but was then dropped by the system and I have been struggling with my depression ever since. In a way I was disappointed that the stroke didn’t leave me with a physical disability instead, because everyone who saw me thought, ‘You look well’. You just end up lying and saying you’re doing fine”.[72]

43. Others were concerned about a lack of follow up or ongoing support to help people to stay well, including people who have been discharged from A&E following self-harm,[73] or leaving hospital after crisis care.[74] The Centre for Mental Health and Society suggested that even where follow up services are available they fail to take account of the social aspects of service users’ lives.[75]

Capacity and waiting times

44. As we noted in our April 2022 report, Waiting well? The impact of the waiting times backlog on people in Wales,[76] mental health services were already severely stretched before the pandemic. The impact of the underlying issues has been intensified by the pandemic, and further exacerbated because the backlog affects some groups and communities disproportionately, including older people, people living in more deprived areas, the digitally excluded, and those less able to advocate for themselves—all groups who are also at greater risk of experiencing mental health inequalities.

45. Reflecting on the impact of the pandemic on access to mental health crisis services, the Wallich said that inadequate capacity to support people who are in severe mental distress or at risk of harming themselves or others could result in situations deteriorating and the police being called. It added that “people in severe mental distress have ended up being detained in a police cell”, which it described as “the punishment and criminalisation of people simply for having an acute episode of mental illness”.[77]

46. The mental health impacts of living with a physical health condition are also increased by long waiting times for other NHS services, affecting people who are living with undiagnosed physical health conditions, are facing long waits for treatment, or who receive inadequate rehabilitation support. Endometriosis UK suggested that access to mental health support, including while people are waiting for diagnosis, could be improved by incorporating it as standard into care pathways.[78]

Waiting times: impact on neurodivergent people

47. Long waiting times can be a particular problem for neurodivergent people, as the absence of a formal diagnosis can be a barrier to accessing help or support. This can contribute to poor mental health, and we heard calls for more emphasis on early intervention and support for children and young people who may be neurodivergent, without them having to wait to receive a formal diagnosis.

48. The Deputy Minister for MHW agreed support should be available without a diagnosis, adding that this “is exactly what our whole-school approach and our nurturing, empowering, safe and trusted framework is designed to do”.[79] The Deputy Minister for SS acknowledged that young people and families are struggling and need early support. She described the Welsh Government’s new three-year, £12 million programme to develop neurodevelopmental services, and said that one of its first priorities would be the provision of ‘cross-cutting’ early support for parents and families. She said a neurodevelopmental services ministerial advisory group had been established to provide advice on the programme, and that services would be co-produced with people with lived experience.[80]

Flexibility

49. Like many who contributed to our work, Diverse Cymru said services should be designed around individuals’ needs “rather than fitting people into a limited range of expected services”.[81] This echoes our conclusion in Waiting well?, that:

“Care and services must be patient-centred, and make sure that people, and those supporting them, including families and carers, have choice, voice and control”.[82]

50. Professor Rob Poole said services must stop seeing groups as hard to reach. He suggested that services need to make better connections with their communities, and take steps to meet people where they are at—both figuratively and literally:

“If you went out and spoke to community groups, formed relationships, formed continuous relationships between the teams, employed more local people from the local community within your service, listened to what people said, provided services that were close to where they were, then, actually, people became much less hard to reach. If you started working with people in their home, and […] not clinic-based, but actually going to people in their own space, which often was less threatening to people and less alienating”.[83]

51. Unfortunately, many people and organisations told us that mental health services are not sufficiently flexible or person-centred. We heard about people being ‘bounced’ between services, including between primary and secondary care, because they were “too ill for primary care/not ill enough for secondary care”.[84] Others described being unable to access support because they did not fit into existing service set-ups or arrangements:

“You must attend an anxiety group even if you don’t trust people and are suicidal, before we can offer anything else”.[85]

“Within the NHS, there is a lack of flexibility in service provision and if patients aren’t able to attend within these specific time-frame they are withdrawn from treatment without any discussion of how needs could be reasonably met”.[86]

52. We were told that traditional clinic-based service models, while helpful for some, can deter others from accessing help and that models that are more aligned to people’s lives and family relationships could be more effective.[87] For example, Professor Euan Hails of the Royal College of Nursing (“RCN”) described an organisation in Australia that provides mental health services in shopping centres, gyms and leisure centres, removing the stigma that may be associated with traditional settings.[88]

53. We saw this for ourselves when we visited Barnardo’s Cymru Beyond the Blue in Neath, which offers a community-based whole family approach. In addition to providing the service from a community centre, the project also delivers outreach and virtual alternatives where appropriate for the type of intervention or support. Beyond the Blue told us that its holistic approach to wellbeing helps children, young people and their families benefit from different approaches and intervention styles that can be tailored to their needs, while being delivered by one service with whom they can build trust and relationships. It explained that this breaks down siloes as well as having a positive impact on children and their families.[89]

Accessibility for different groups

54. The evidence shows that the people and communities most vulnerable to mental health inequalities face more barriers to accessing appropriate support. In many cases, the support available may appear less relevant to them, or be too inflexible in its design. The way mental health is talked about may resonate with some groups, but not others. For example the Older People’s Commissioner for Wales said that messaging that works for children and young people will not necessarily work for older people, whose needs and concerns may be very different.[90] Similarly, the needs and expectations of people from different ethnic communities may vary. Ashra Khanom of the Neath Port Talbot Black Minority Ethnic Community Association described a conversation with asylum seekers in Swansea Bay:

“…before I came to the meeting, I asked Swansea bay asylum seekers groups to provide some recommendations for me to pass on to the committee. And they were saying that sport was one of the best ways that they found that mental health worked for them. They don't like the issue where you had to go into a darkened room and talk to somebody about your mental health. One person, I think a couple of years ago, said to me, 'If I was in Africa, we'd be in a community group and we'd drum our sorrows away'. Here, it's like you talk your sorrows away, and it's really difficult for them to understand that”.[91]

55. As Andy Bell said, if groups are not engaging with services, or are having poorer experiences, the solution must be to change the nature of the support or services rather than just “shout louder”.[92]

Box 6:

Accessibility barriers

Inadequate Welsh language service availability creates barriers that could put the health and wellbeing of Welsh speakers at risk if they are not able to access services in their preferred language.[93] The RCN suggested that linguistic skills should be recognised more strongly in workforce planning.[94]
People from racialised communities are less likely to be referred for mental health support by their GP, but more likely to come into contact with services via the police.[95]
Services may appear threatening, resulting in people being fearful about seeking support. Our advisory group told us that parents may worry that their children will be taken into care if they admit they are not coping; older people may fear losing their control and independence if they ask for help;[96] and neurodivergent people may fear being detained under the Mental Health Act 1983 on the basis that “Autism is still classed as grounds to be able to section people—when you have a GP who doesn’t understand autism and they have that power it’s really scary”.[97]
Deaf people and people with hearing loss or impairment are more likely to experience mental distress or mental ill health, but provision is severely lacking. PHW said that “Wales is the only UK country that does not provide a clear pathway or service to meet the needs of Deaf people experiencing poor mental health”.[98]
People in rural communities, including farming and fishing communities, may have to travel long distances, navigate poor transport links, and struggle to access services within limited opening hours.[99] The DPJ Foundation, a mental health charity that works with agricultural communities in Wales, also described a failure to recognise or empathise with farming identities and lifestyles.[100]
Some groups, including healthcare students, may find the lack of evening and weekend appointments, or limited availability of virtual appointments, prevent them from accessing services they need.[101]
Increasing use of digital delivery may increase accessibility for some groups or communities, but create barriers for others. We heard that a significant number of older people do not have access to the internet, or lack the confidence and skills to engage with digital technology.[102] Similarly, only 79 per cent of people with disabilities feel safe and confident using the internet compared to 93 per cent of people who do not have long term conditions or disabilities.[103]
Our advisory group told us that people seeking support may be faced with bureaucracy, including long or complicated forms which use jargon or otherwise inaccessible language. Public services’ complaints processes can be similarly inaccessible, which people with lived experience of neurodivergence told us could increase mental distress. They suggested there was a need to increase the availability of advocates who “understand neurodiversity, the experience of neurodivergent people, and how to communicate effectively”.[104]

Interpretation and translation for languages other than Welsh or English

56. The lack of adequate interpretation and translation services to enable people whose main language or preferred language for accessing mental health services or support is a language other than Welsh or English[105] was a strong theme in the evidence. Professor Keith Lloyd of the Royal College of Psychiatrists Wales described improving access to interpretation services as a “simple measure” that could help people who are otherwise “significantly disadvantaged”.[106]

57. In 2018 the then Auditor General for Wales (“AGW”) published a report on language and communication barriers relating to public services in Wales. He found that 84,500 people in Wales had a main language that was not Welsh or English, and there are more than 80 main languages other than Welsh and English. The majority of these people live in one of four local authority areas: Wrexham, Swansea, Newport and Cardiff. He also found that 19,500 people did not speak Welsh or English well, and 3,500 did not speak Welsh or English at all. The report concluded that public bodies “varied in the degree to which they understood the needs of their communities and ensured their services were accessible to people needing interpretation and translation services”. Among other things, it recommended that:

“…the Welsh Government work with public bodies, representative groups and other interested parties to make sure that:

the supply of interpreters is sufficient especially for languages in high demand such as BSL and Arabic;

interpreters with specialist training are available to work in mental health services and with people who have experienced trauma or violence; and

quality assurance and safeguarding procedures are in place”.[107]

58. In July 2018 the Welsh Government accepted all of the AGW’s recommendations.[108]

59. During our visit to EYST Cymru in Swansea, staff, volunteers and service users told us that the lack of interpretation services for languages other than Welsh and English continued to be a significant issue. They told us that young children may have to interpret for their parents at medical appointments, including in relation to issues such as rape. EYST Cymru’s own staff and volunteers also find themselves called upon to provide translation, or even counselling, to service users in respect of traumatic events, sometimes causing them to relive their own traumatic experiences with corresponding implications for their own mental health. Most family members or volunteers are not trained interpreters; if they find themselves called upon to translate in their second or even third language they may struggle to interpret technical medical terms, placing people at risk of receiving the wrong treatment or taking the wrong medication. We also heard about particular difficulties for people to navigate health triage systems such as GP appointment systems or NHS 111.[109]

60. Dr Julie Keely of the Royal College of General Practitioners Wales told us that arranging interpretation or translation for acute needs could be difficult, but that it was “not a problem” to arrange medical translation for pre-arranged appointments.[110]

61. The Deputy Minister for MHW said that resources were being made available in “multiple languages”, including the National Centre for Mental Health trauma toolkit, Time to Change campaign materials, and materials to promote the CALL mental health helpline. She added that the CALL helpline also uses LanguageLine to help people access the service.[111]

Trauma-informed services

62. While acknowledging that the COVID-19 pandemic had not necessarily led to a significant rise in mental disorders, the Fifth Senedd Health, Social Care and Sport Committee described it as a cause of “population-level trauma”.[112] Similarly, the Centre for Mental Health forecast in 2020 that around 10 million people in England would need additional support for their mental health.[113] The impact on children and young people has been particularly acute; the then Children’s Commissioner for Wales highlighted, for example the impact of loneliness, uncertainty about schooling and exams, and fears about their future.[114] She told us that the experience of trauma was not equal across all children and young people, rather the pandemic had exacerbated existing social inequalities:

“…disabled children and ethnic minority children reported significantly more negative feelings across many indicators, and that included anxiety amongst children from black and ethnic minority backgrounds about the impact of the pandemic on their relatives, including their older relatives, with, obviously, the higher death rate amongst those communities”.[115]

63. Dr Antonis Kousoulis of the Mental Health Foundation called for a trauma-informed approach across mental health and other public services. He highlighted Wales’ whole-school approach to children and young people’s mental health and wellbeing as a positive example of this, describing Wales as a “real leader internationally in this space”.[116]

64. Trauma-informed approaches are ways of supporting people that recognise the impact of past or ongoing trauma, and the specific needs a person may have as a result. A trauma-informed framework for Wales was published earlier this year, defining a trauma-informed approach as:

One that recognises that everyone has a role in sensitively facilitating opportunities and life chances for people affected by trauma and adversity.
Where a person, family, community, organisation, service or system takes account of the widespread impact of adversity and trauma and understands potential ways of preventing, healing and overcoming this as an individual or with the support of others, including communities and services.
Where people recognise the multiple presentations of being affected by trauma in individuals, families, communities, staff, and others in organisations and systems across all Welsh society.
In this approach knowledge about trauma and its effects are integrated into policies, procedures, and practices. It seeks to actively resist traumatising people again and prevent and mitigate adverse consequences, prioritising physical and emotional safety and commits to ‘do no harm’ in practice and to proactively support and help affected people make their own informed decisions.

65. It acknowledges, however, that there is more work to be done to identify how to assess the impact of a trauma-informed approach on the population, including “detailed work to identify key deliverables and qualitative and quantitative indicators of success that can be routinely measured”.[117]

66. The Deputy Minister for MHW told us that implementing trauma-informed approaches will require a significant cultural shift across many different organisations. She told us this would be led by the ACEs Hub and Traumatic Stress Wales in a co-productive way, supported by £300k[118] of Welsh Government funding.[119]

Joined-up working

67. Many people and organisations called for services to be more joined-up, and focused on the whole person instead of seeing and treating problems or conditions in isolation. Otherwise, people may be bounced between services, receive poorly-coordinated care, or even be excluded from some services if there is too much focus on their primary diagnosis. For example, experts in neurodiversity described the disconnect between neurodevelopmental services and mental health services as a key barrier that could prevent people receiving diagnoses or appropriate treatment. Professor Anita Thapar of Cardiff University told us:

“…people who have got mental health problems, which have been really chronic, long term and not responding to treatment, quite a good proportion of them have had undetected neurodevelopmental conditions. So, the disconnect between neurodevelopmental and mental health is a problem across the lifespan”.[120]

68. The Royal Pharmaceutical Society said the absence of shared care arrangements between primary and secondary care could cause “delays in obtaining medications and medication advice in primary care settings which can be a problem when a patient’s condition needs to be stabilised”. It called for greater support for GPs, the introduction of shared care protocols, and improvements in the interoperability of IT systems in use in primary care and specialist services.[121]

69. Our advisory group similarly highlighted the need for effective information sharing between services to minimise the need for people to repeat their experiences and relive their trauma over and over again. They cautioned, however, that patients need to have ownership over their medical records, and a say in which medical professionals have access to the full details of their experiences.

70. The Children’s Commissioner for Wales told us that while progress was being made on joined up working between mental health and social services, issues still remained.[122] The Royal College of Psychiatrists Wales similarly suggested that joined-up working should go beyond health services to take account of people’s broader needs and reflect the wider social determinants of mental health. For example, it suggested co-locating financial and housing advice services with mental health services to help address the root causes of distress as well as mental health and wellbeing needs.[123] Professor Euan Hails told us that most health boards’ CAMHS services now operated on a “no bounce” basis i.e. if someone presents they are then directed to the appropriate service, whether that is primary or secondary care, social services or education.[124]

71. The Deputy Minister for MHW acknowledged that joined up working can be challenging, but said that it was a focus for the Welsh Government and that progress was being made.[125]

Our view

72. It is deeply regrettable that groups with particularly high levels of poor mental health often have the most difficulty accessing support, and when they do get help, their experiences and outcomes are often poorer.

73. Services need to be more joined-up rather than operating in siloes, more flexible and person-centred, and better able to work together to design and deliver support that is tailored to individuals’ needs with pathways that reflect individuals’ own circumstances. This is particularly important for people who have co-occurring conditions or problems, such as mental health, eating disorders, or alcohol or substance misuse. We agree with our advisory group that an important part of developing person-centred services is ensuring that people are involved in the design of their support. We also agree with them that this could be facilitated through increasing access to care coordinators, independent advisers and advocates to support people who may be struggling to navigate systems, including complaints processes.

74. We have heard about a lack of provision across the spectrum of needs, as well as gaps in provision affecting particular groups. This is exacerbated by lengthy NHS waiting times, support being time-limited once it is available, and a lack of follow up support. We have acknowledged that the NHS waiting times backlog will take time to resolve.[126] However, in the meantime, steps can and must be taken to minimise the mental health and other impacts of the backlog on people who are waiting. Neurodivergent people are particularly at risk from mental health inequalities. Neurodivergent people, and people who are waiting for assessment and diagnosis, are also particularly affected by the waiting times backlog.

Recommendation 5

The Welsh Government should, in line with the recommendation from our advisory group, publish a roadmap setting out clear actions at national and local level to improve mental health among neurodivergent people. This should be published by July 2023, and include actions to simplify and make more accessible the process for adults and children to be assessed/diagnosed for neurodivergent conditions.

75. Improvements are particularly needed in the early support for children and young people who may be neurodivergent and their families, including ensuring such support is available without a formal diagnosis. We welcome the new three year, £12m programme to develop neurodevelopmental services including cross-cutting early support, and want to see this progress with pace and urgency.

Recommendation 6

In its response to our report, the Welsh Government should provide assurance that work to develop cross-cutting early support for children and young people who may be neurodivergent, and their families, before they receive a formal diagnosis will be progressed with pace and urgency. This should include setting out what specific actions will be taken and when, and details of when and how evaluation will be undertaken to assess whether people’s experiences and outcomes are improving. Consideration should be given to the use of peer support approaches, video buddies and neurodivergent champions.

76. We will not see mental health inequalities reducing unless mental health services feel accessible and welcoming to everyone who may need them. We agree with Ewan Hilton of Platfform that it is not that people are hard to reach, rather services are too often structured and managed in ways that makes it hard for people to reach them.[127] While some services need to be delivered in clinical settings, others can and should be delivered in non-clinical community settings. This can help people feel more comfortable and welcome, as well as addressing barriers such as transport costs or the time people need to be away from caring responsibilities, education or employment. Effective use of digital technology can also bring services closer to people and communities, provided alternatives remain available and action is taken to close the digital divide and guard against perpetuating existing inequalities or creating new ones.

77. We are particularly concerned at the lack of specialist deaf mental health provision in Wales. As the National Deaf Children’s Society said in its submission to our consultation:

“Deafness itself does not increase the risk of mental health difficulties, but rather the impact of being deaf in a hearing-orientated world and the challenges deaf young people face therein can increase the incidence”.[128]

78. We are concerned that Wales is the only UK nation without a specialist deaf mental health service, but welcome the evidence from the Deputy Minister for MHW that she is looking to make the All Wales standards for accessible communication and information compulsory for the NHS and social care, improve access for deaf people who use British Sign Language, and undertake a comprehensive review of mental health provision for deaf people of all ages.[129]

Recommendation 7

In its response to our report, the Welsh Government should set out a clear timeline for the urgent review of mental health provision for deaf people and commit to providing us with an update on the review, and any conclusions or emerging findings, by July 2023. It should also provide assurances that the review will take account of the issues raised by the All Wales Deaf Mental Health and Well-Being Group in its report, Deaf People Wales: Hidden Inequality, and consider whether the establishment of a national specialist deaf mental health service for Wales is required.

79. The barriers caused by inadequate translation and interpretation services are also a concern. It affects not only the individual in need of help or support, but also their family, friends or community members who may be called upon to provide translation or interpretation support without being trained to do so and who may experience trauma as a result. We note that medical translation services do exist, and we welcome the evidence from the Deputy Minister for MHW that resources are being translated into community languages. However, the evidence suggests there may be a disconnect between what should be available, and what people are actually able to access. In our view, access to interpretation and translation is a public service issue, not just a health service issue. Creating environments in which people can thrive, and which build positive mental health and wellbeing, requires tackling the wider social determinants of mental health. To do this, we need to overcome barriers to accessing wider public services, such as education, housing and financial advice, as well as barriers to accessing mental health services for people who need them.

Recommendation 8

In its response to our report, the Welsh Government should provide an update on the implementation of the recommendations made by the Auditor General for Wales in his 2018 report, Speak my language: overcoming language and communication barriers in public services.

Recommendation 9

In its response to our report, the Welsh Government should outline what duties are on health boards and other public services to provide interpretation and translation services for languages other than Welsh and English. In doing so, it should provide assurance that the duties in place are adequate, and are being implemented effectively, to reduce the reliance on family members or community volunteers to provide interpretation or translation other than in urgent or emergency cases.

Recommendation 10

We endorse and reiterate recommendation 1 made by the Equality and Social Justice Committee in its October 2022 report, Gender based violence: the needs of migrant women, that the Welsh Government should consider creating and maintaining a directory of recognised interpreters.

80. We also want to see greater recognition that the distress and difficulties many people experience may be the result of trauma, including ACEs. We support the development of trauma-informed services, and the delivery of trauma-informed training for mental health, health care and other public service staff. But, we also recognise that such training must be accompanied by broader cultural shifts to ensure that ‘trauma-informed’ does not become a label, a buzzword or simply a tick-box exercise. To this end, we welcome the publication of the trauma-informed framework for Wales, although as with any framework, its potential impact can only be secured through its effective implementation. We note that the framework states that monitoring progress and evaluating the impact of a trauma-informed approach will be “challenging”, and that work is needed to “identify key deliverables and qualitative and quantitative indicators of success that can be routinely measured”.[130]

Recommendation 11

By July 2023 the Welsh Government should publish the key deliverables and qualitative and quantitative measures for the impact of the trauma-informed framework for Wales, and put in place a robust evaluation framework. If the Welsh Government is not able to commit in its response to our report to the work being completed within this timeframe, it should explain why it is not achievable and provide information about the timescales within which the measures and evaluation framework will be completed.

81. As many of those who gave evidence told us, building positive mental health and wellbeing should begin early in a child’s life.[131] We agree that positive and healthy relationships and connection in the earliest months of an infant’s life are vital for their healthy development and their future mental health.

Recommendation 12

The Welsh Government should work with relevant organisations to ensure that appropriate and supportive information on attachment and parent-child relational health is provided to expectant parents and new parents, for example in literature and via antenatal classes. In line with our recommendation 22, the Welsh Government should provide us with an update on this work in December 2023.

— Chair's foreword

— Recommendations

— Summary

— Introduction

— Mental health inequalities

— Person-centred services

— Mental health is 'made' in communities

— Social prescribing

— Workforce

— Coordinated cross-government action

— Reform of the Mental Health Act 1983

— Annex: Mental health and emotional support