JOINT MEETING WITH THE ALL-PARTY PARLIAMENTARY GROUP ON MENTAL HEALTH AND THE ALL-PARTY PARLIAMENTARY GROUP FOR CARERS - MEETING ON MENTAL HEALTH CARERS

Tuesday 13^th May

The chair, Lynne Jones MP, welcomed the members to the All Party Group on Mental Health.

Mr Drew Lindon, The Princess Royal Trust for Carers[1].

Mrs Sanchia Redston, a Mental Health Carer.

Mrs Redston spoke about her personal experiences as a mental health carer and highlighted the main issues facing carers of those with mental health problems. She highlighted the main concerns as being the lack of transparency in the system; the failure of doctors to respect the position of the carer as a responsible, semi-professional, parity; and the problems arising through a lack of effective carer respite.

Mr Brendan Hayes, Northampton NHS Trust.

Mr Hayes spoke of the main aims that his Trust, Northamptonshire NHS Healthcare Trust, is trying to implement:

-          Strategic Engagement:

·                Shared Platforms

·                Service Designs

·                Signing up to plans: e.g. decommissioning traditional respite care and reinvesting into direct payments to mental health carers.

·                Continuous Review

·                Leadership

He spoke of the changing role of the NHS in Northamptonshire, how it is altering and continues to build on the number of community support staff and on support in general through the following strategies:

·                Management: reducing bureaucracy.

·                Facilities: improving access.

·                Accommodation: carer support accommodation.

·                Finances.

·                Information: wider access, linking carer websites to their own to increase exposure.

·                Telephone Lines: direct access to reduce isolation, improve responsibility and improve complaints procedure.        

·                Training: Support and wider access to training events.

Ivan Lewis MP, Parliamentary Under-Secretary for the Department of Health.

Mr Lewis greeted the speakers and gave special mention to Sanchia for her role in her family’s well-being and care.

He raised the point that carers need time to themselves, but that respite care does not alleviate the concerns that the carer has for their charge.

In giving an outline of what policies have been, and are intended to be, implemented he stated that the New Deal is a response to talking to carers themselves, and concentrates on two main issues:

·               Carers want a system that supports, not hinders, them.

·               Carers want recognition that they need a life for themselves.

In commenting on legislation introduced in 1999 he said that this legislation:

• Saw the introduction of the “annual carers grant” to local authorities.
• Saw that employed carers are given flexible employment.
• Ensured that there is a legal right to flexible working hours.
• Mentioned the legal right to apply for pension credits.

He also mentioned that there has been an increase in the number of grants in the last year to fund respite care.

In introducing plans to be implemented and those which are underway he listed:

• A national website available for information.
• Training for carers to improve confidence in working with professionals as equals and improving practical knowledge.
• Breaking down stigma. Working with charities, funding of £80 million to tackle stigma, prejudice and discrimination. 

He made several acknowledgements about failures including the failure to comprehensively address mental health carers’ needs and the need for greater recognition of the service they give to society.

In reintroducing what he saw as the main concerns for mental health carers he listed:

·          Income.

·          Respite.

He clarified the use of the term “respite” as regular support in the home, and that it is not the frequency of respite care that is at issue but rather the quality of care available that is of most concern to carers.

In acknowledging that there was a need for increased ease of accessibility to advice and information he also raised the issue that many staff are unwilling to accept responsibility. As an extra failing he noted that many carers felt that they are not treated with respect as semi-professionals or expert partners, and this is exacerbated by poor communication from service providers and the fragmentation between systems. He called for public services to be re-humanized with people’s concerns at the heart of service since it is the people involved in a situation who are best able to judge the situation.

Mr Lewis then discussed the issues concerning young carers, which included:

• The need to address disproportionate reliance on a child; the child should be allowed to be a child.
• Better communication to help young carers.
• The need to look at the family as a unit, in a more holistic approach so that responsibility is not divided between agencies which concentrate on adults and another which is concerned with the under-18s.

Mr Lewis ended his speech by making the point that the media focuses more on care for the elderly than on care in general and asked: as the population ages we need to consider how much care we expect from the state and from where the finance should come. Finally he announced the introduction of a new Ten Year Plan.

Discussion from the floor

Sanchia Redston said that she was pleased confidentiality had been raised as an issue, but mentioned that she would like to remind doctors that they have a duty of care and they fail in that duty if they exclude the mental health carer.

Ivan Lewis responded to this point by saying that the problem lay with a lack of clarity in the rules concerning confidentiality. He acknowledged this as an issue that needs addressing but also said that there could be an issue of conflict of interest if the mental health carer is perceived by the patient as part of the cause of their problems. He stated that there is no easy solution to this problem.

Lynne Jones stated that it is too easy for clinicians to assume that the patient wants something that they have not articulated.

A member of the audience said that she agreed with Lynne Jones’ comment but stated that it is possible for a patient to make their wishes known in advance as a safeguard.

Another audience member stated that advance decisions are not as effective as the previous speaker assumed. She cited the example of her daughter who, although committed, is required to consent to most actions as a result of an advance decision. Further she stated that these decisions were subject to constant review. 

Drew Lindon replied agreeing that it is a difficult issue. He made the point that the key thing is for professionals to work out, as soon as possible, what information can be shared, but also stated that the Code of Practice is not positive about information sharing.

Phil Partridge made the point that the Royal College of Psychiatrists’ draft is very good but that it is incomplete in regards to confidentiality. He said that practitioners are too afraid as a result of their training and that this is an issue that needs to be addressed in this training.

Ivan Lewis replied to the above points about confidentiality by saying that Phillipa Russell is chairing a commission and they will hopefully look into the matter.

Joan Penrose asked for the minister to acknowledge the campaigning that local carers are involved in to improve the services they receive and the problems they face from service providers.

A member of the audience raised the issue of confidentiality again saying that the issue is complicated when the primary carer is not the next of kin. He stated that professionals need to be trained to respect carers. To this end he cited the example of Nottingham University which has invited doctors to attend classes where they admitted that they did not see carers as part of the professional team, this attitude changed after the meetings. He reiterated his point saying that Psychiatrists need more training with carers to see them as equals.

Ivan Lewis, after acknowledging Mrs Penrose’s request, stated once again that there is a need for more integration. He stated that change is not about legislation but rather about carers implementing local change, and local carers have done a great job. He mentioned that professionals need to see the world from the position of the family and understand that the family should be the focus. He said that by focusing on re-humanizing services he hoped to improve personal service by closer contact with families.

An audience member raised the point that the biggest difference that can be made to carers is to improve the situation of those they are caring for. She applauded the holistic approach outlined by Mr Lewis but pointed out that telephone services need greater integration and that carers should be at the centre of that service.

The issue of care-coordinators attitudes was also raised, and it was stated they can be unhelpful.

Andrew Bailey from the Northampton NHS Trust stated that his carers work within the Trust and so can deal with confidentiality “fairly well”. He wanted to see A National Improvement Group that would give training including care and services that would be user oriented. He stated that in regard to those being cared for by young carers there is a fear that social services will remove the young carer because they perceive there to be a danger, which is often not the case. He suggested that there should be encouragement to local councils to see things from the needs of the carers and not simply “box ticking”.

Caroline Ward asked how Mr Hayes intended to introduce his reforms.

Brendan Hayes replied that change is ongoing. He said that it had started last year by talking to carers and the Trust setting their own targets. Moving back to the previous issue of confidentiality he said that in his experience clinicians were willing to liaise with carers over confidentiality and made the point that confidentiality should be in regard to the general public not to carers.

Sanchia Redston replied that to facilitate greater ease of communication her group (Rethink Carers Support Group in Northamptonshire) invites mental health professionals to their meetings to help build relationships.

Drew Lindon stated that his organization was optimistic about the New Deal, but that the real issue was about implementation, not what is written on paper. He acknowledged that improvements have been made in regard to mental health carers however the fact that families are part of after-care and a great support needs to be recognised. He closed by saying that all carers, not just mental health ones, do not have the same requirements as the service user.