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The Princess Royal Trust for Carers response to the New Horizons consultation

We welcome and value New Horizons, particularly its aspiration that mental health should be seen as of equal importance to physical health. New Horizons is also consistent on the general messages we would like to see for carers of people with mental health problems, including:

  • families and carers should be “welcomed as partners by services and will be listened to and supported by professionals” (p.5)
  • respect for families and carers’ autonomy (p.17)
  • the need for involvement of families and/or carers in the assessment, treatment and recovery process (p.23, 60, 63)
  • involvement and consultation of carers in developing services (p.23)
  • carers’ having necessary information to be able to care (p.25)
  • carers (including young carers) as a group who may be at risk of mental health problems themselves (p.36, 87)
  • support for young carers of parents with mental health problems (p.71)

We warmly welcome this recognition of carers’ role and needs within the strategy, and urge the messages to remain, and be developed in line with our comments below, in the final version of the strategy. We see this inclusion as a powerful statement from the Government about the necessity of supporting and involving mental health carers, which should inspire local services to do better. The question is what more this strategy may do to improve mental health carers’ situation beyond simply recognition in policy.

We have concerns as to how this vision would be effectively implemented. Certainly the localisation of health and social care governance means that overarching targets from the Department of Health are not as possible or appropriate as they might once have been (if ever they were). But we would like the Department of Health to be clearer on how progress towards the New Horizons vision will be measured, or indeed made accountable, without some degree of centralised target-setting, or more detailed direction from the Department.

We outline how some of our concerns could be addressed in our answers to the consultation questionsbelow. This response has been endorsed by a number of members of the National Young Carers Coalition:

-The Princess Royal Trust for Carers

-Family Action,

-Crossroads Care

-Barnardo’s

-Young Carers International at the University of Nottingham

-Action for Children

-Disabled Parents Network

  1. What do you think are the three most important changes for mental health and mental health care in the next 10 years? And why?
  • Personalisation: services should be tailored to the individual needs of the person with mental health problems and their families. This means services must also recognise that individuals often have and require support from families and carers, including young carers. A personalised mental health service will be flexible to an individual’s needs and aspirations for recovery, and will work in partnership with carers. This should ensure that carers have a choice about the amount of caring they take on, and that young people do not have to take on inappropriate caring roles.
  • Accessibility and responsiveness: services must be simple and easy to access. It should be clear to people affected by mental illness (both service users and carers) how to access support at different stages of the condition from the mental health system. Information on alternative sources of support, such as carers’ services, should be routinely offered by health and social care services.

Moreover, people with mental health problems should be able to get a service whenever they need it. Even with the growth of early intervention services, too often individuals and families must reach a crisis point before services will be offered. This is both damaging to the long-term recovery prospects of the service user, injurious to the health and well-being of carers, and a waste of public money in the long run, as more costly interventions will be required at a crisis stage. While good crisis management services must be available, there needs to be greater provision of, and accessibility to, early intervention services for people at early stages of mental distress. Easing the access to secondary mental health services (for example, not requiring a referral from a GP if a person has been treated by a CMHT before) will also support recovery for individuals.

  • Involvement and information-sharing with carers: linking to our points above, involving and identifying families and carers, including sharing relevant information with them requires improvement to ensure both carers and service users can safeguard their own health and wellbeing. Young carers in particular are often not identified by adult services, and parenting support for mothers and fathers with mental health problems is often uncoordinated or not offered.Additionally, confidentiality in mental health continues to be misapplied in many circumstances to prevent carers from receiving even general (and non-confidential) information that may support them in their role. This point is addressed by New Horizons (see p.23, 25), but it is unclear how these changes are going to be delivered. Likewise, carers’ own rights to confidentiality of the information they share with professionals is often not safeguarded. The Princess Royal Trust for Carers can help in promoting best practice and training in local areas, but there needs to be a national drive on this issue from the Department of Health (see our responses below).
  1. Do you support the twin themes of public mental health/prevention and mental health service development? Please explain your views, giving examples if possible.

Yes. Both themes must be pursued vigorously if we are to make lasting improvements to the care, support and perception of mental illness in England. Part of developing effective public health messages would include making clear what is meant by ‘mental wellbeing’, ‘mental health problems’ and ‘mental illness’.

A good example of service development in relation to prevention would be services such as Family Action’s Building Bridges. These provide home-based support to families where parents have mental health problems, working with both parents and children in the family, help to ‘break the cycle’ of children becoming parents with mental health problems themselves. This is achieved by working with the family, enabling children (who are often in a caring role) to better understand the issues their parent is dealing with, the impact it is having on them, and protect their own mental health in the future. Additional practical support in the home further enables parents to support their children and achieve better outcomes.

  1. Are the guiding values described in section 1 the right ones? Please explain your view giving examples, if possible.

We agree with the guiding values, and particularly value the support for families and carers section. However, the question remains how these values will be instilled in mental health services and practice, without additional funding to implement the Strategy and specific areas of work.

  1. What should the Government do to promote more personalised services for people with mental health problems and their families? It would be helpful to hear about both what works in your area, and, if appropriate, what does not and what could be done in the future.

More services available at support/STAR worker level would help with early identification, intervention and personalisation of services. This could be provided at a level below CPN and would require less qualified staff. This would be a bottom-up service with a tier of trained support workers with good interpersonal skills who can meet with the person with mental health problems regularly and build a relationship with them. They would work flexibly and be able to respond quickly to issues and feed them back to the team they work with. This would take some of the burden of monitoring the mental health state of the person they care for and the feeding back of other issues, off the Carer.

The Department should be also promoting the use of advance statements with GPs as well as secondary care. This will help create more personalised and appropriate care for individuals. If the service user consents, carers should also be given a copy of advance statements to ensure they are being adhered to.

The Princess Royal Trust for Carers Putting People First Without Putting Carers Second demonstrates how services (including mental health services) can develop more personalised approaches which address the needs of carers and families too. We have also helped produce the Department of Health’s new Carers Commissioning Guidance which will support the development of comprehensive carers services, vitally necessarily to ensure that carers are also supported, and therefore able to care effectively for people with mental health problems. We would recommend that both of these documents are integrated into the final New Horizons paper.

Finally, it is important overall to recognise the value of the third sector in successfully engaging with parents, children and families who may be reluctant to engage with statutory services because of stigma. Third sector organisations can reach many seldom-heard groups who are more willing to engage with staff seen as ‘outside of the system’. In this sense, engagement and partnership with third sector organisations both locally and nationally would be an essential component of developing more personalised mental health services, for families as well as individuals.

  1. In your view, which are the most important areas in mental health services where value for money could be improved? And how should that be done? If possible, please indicate examples of the current costs of services and areas where the potential savings might exist.
  • Improving the speed of referral and appropriate signposting will aid recovery and reduce strain on resources through people accessing the wrong service and waiting to be re-referred.
  • As discussed previously, improving the emphasis on early intervention and preventative services will save money as well as preventing crises and resultant impacts on individuals’ health and recovery prospects. Some of our Carers’ Centres have suggested having short-term respite services in each local area available for service users to offer them sanctuary and quiet to prevent moving into crisis. But this does not discount the necessity of effective and flexible inpatient services for service users who require this level of care, nor the need to continue involve with, and support of carers while their loved ones are in inpatient wards.
  • Improving support for carers will help save money in the long run, as carers will help provide ongoing support for people with mental health problems outside of formal treatment. However, this must be tempered with a respect for carers’ own needs, so that they are not forced into inappropriate or damaging caring situations (particularly in the case of young carers).
  • In some areas, it may be appropriate to bring diverse services (including mental health, carer, employment and financial services) together in a ‘one stop shop’ which service users and carers can drop in to and see staff. This would save travelling time and costs for staff.
  1. Which areas can you identify where innovative technology can help people with mental health problems, and their families? It would be particularly helpful to hear about examples of what works well in your local area and what could be done in the future.

It is difficult for some individuals to attend appointments, particularly with the debilitating effects of some conditions (such as depression or agarophobia) and the effects of psychiatric medications on sleep patterns. It would be useful to pilot appointments with mental health professionalsvia webcam or email. GPs may also be able to use collective databases to identify possible concerns; for example, if a person has not collected their repeat prescription for an antipsychotic medication.

  1. In your view, where are the current gaps in research evidence supporting the development of New Horizons?
  • Research into the impact of Community Treatment Orders on service users, carers, and staff time
  1. How can we support local leadership in building mental well-being and mental health care services? Please explain your view giving examples, if possible.

Developing local leadership to improve mental health services requires the effective coordination of existing support, as well as the involvement of all stakeholders in this area. A successful model to coordinate both carers and service user support is to embed carers support workers within community mental health teams. A growing number of our independent Carers’ Centres have taken this approach in recent years. Carers Gloucestershire is one example.

The Carers Gloucestershire Mental Health Carer Support Team is instrumental in building mental well-being and mental health services through being based with NHS Mental Health Teams but working independently of them. This enables the Carer Support Team to raise the profile of carers’ needs and rights amongst the mental health teams and work to ensure the teams consider the carer’s mental well-being when working with the service user. The team ensures carers voices are heard through linking carers into consultations. The team also keeps carers informed with information pertinent to their caring roles through publications.

The group valued the role of the Mental Health Carer Support Worker but felt it would be better if there was more support workers available to offer a rapid response service and the advocacy role that the team provide, mainly liaising between the Carer and the mental health services, be more widely promoted.

Similar models exist in Winchester and Northamptonshire areas; in the latter, this model has been so successful that it has now been applied to carers support in other settings, including general hospitals.

We would strongly urge for this and similar models to be implemented across the UK, to improve the coordination of the wide range of support required in local areas, and promote greater ownership of support services by carers and service users. We would be keen to support this work, and would offer our expertise to the Department of Health to do so.

  1. How can we promote joint working between local authorities, the NHS and others to make New Horizons effective in your local area?
  • Improve identification and support for carers

We welcome the messages about carers within New Horizons. But there seems to be few substantivepledges to address the specific needs of carers of people with mental health problems. While the national Carers Strategy is working to improve recognition and support for all carers, this did not focus on the specific needs of particular carer groups, and how these might require additional focus.

Supporting and involving mental health carers is in the long-term interests of the UK’s health and social care system. Supporting these carers can mean mental health service users recover more quickly and require fewer services. All carers are estimated to save the country up to £87bn per year[i] and this figure could rise with better support. Withoutaid, many carers fall ill from the pressures of care, become unable to care any longer and require greater support themselves. Service users’ wellbeing suffers as a result.

In this way, a lack of commitment to support mental health carers leads to greater demands on the health system in the long term. As such, for New Horizons to be successful in each area, we must promote joint working between mental health and other services to ensure both service users and carers are supported well. Our service example in the previous answer gives some detail to how this could work in local areas, as does our second bullet point below.

Additionally, young carers are often an ‘invisible’ group; ignored by some adult mental health services that focus on the needs of the service user, and often ‘bounced’ from children’s services that do not see the support needs of the parent as their responsibility. We would strongly urge the Department to have a greater emphasis on whole family working within the final version of New Horizons, drawing on the work of the Young Carers Coalition, and its associate members. Likewise, a range of useful resources to promote effective joint working in this area are available, such as The Princess Royal Trust for Carers’ professionals’ site ( the recent SCIE guidance on parental mental health and child welfare , and the ‘Young carers, parents and their families: Key Principles of Practice’ from The Children’s Society.

  • Tackle staff misunderstandings and misapplications of confidentiality principles

A particular issue for mental health carers are issues around confidentiality and information-sharing. Joint working between NHS, local authorities and voluntary organisations is needed to ensure consistency and better knowledge around this area.