North Derbyshire Mental Health Forum History

The first meeting of a Mental Health Carers Forum was held on 28th July 1998 - just over a year before the publishing of the National Services Framework for Mental Health in September 1999. Four people attended this first meeting - Lynda Novak, Doreen Booker, Celia MacDonald and Margaret Wibberley. The aim of the group was to improve the local mental health service response to carers and their issues.

At this first meeting it was agreed to :-

• Conduct a carer survey to gain carers’ views and
• Develop a set of carers’ quality standards for North Derbyshire.

Membership would consist of people who have direct experience of caring for someone with a mental health problem. Professional staff would be welcome if they have a personal interest in carer issues.

At the second meeting a brainstorming session produced a list of the main issues for carers :-

• Not enough useful, practical information is given to carers.
• It appears that no-one bothers with their needs.
• There is a lack of understanding about caring for someone with a mental health problem for 24 hours a day.
• Sometimes it is necessary to ‘shout’ to be heard.
• Carers’ own health can suffer.
• They are also stigmatised.
• Respite is often not mentioned or offered.
• They do not always hear about the support that is available to them.
• Self help groups make a difference.
• GP’s can sometimes be unsympathetic.
• Sometimes the person with a mental health problem uses emotional blackmail.
• The burden of responsibility can be too much.
• Life can be very lonely when you are ‘on duty’ all the time.
• Feelings of guilt can be reinforced by workers.
• The expertise of the carer is often ignored.
• More time with the carer is needed when the first episode takes place.

At the "first official meeting" that followed in September, twelve people were present, including Helen Severns, Mental Health Commissioning Manager. Three officers were elected - Margaret Wibberley, Chair ; Doreen Booker, Vice Chair: Mary Russell, Secretary. It was decided to concentrate purely on Mental Health Carer issues. The production of a new information leaflet for local distribution was agreed to be a priority. Doreen Booker will organise the production of a draft document and this will be further discussed at the next meeting.

Wednesday Oct 28th 1998 records that A new current account has been opened at the Yorkshire Bank, with the proceeds of an initial raffle at our inaugural meeting. Treasurer to report at next meeting on new Account balance. £200 was to be paid over to this Forum by North Derbyshire Voluntary Action and a raffle would be held every meeting, members providing prizes in turn to be raffled.

By February 1999 it was agreed to go ahead as soon as possible to get 400 information leaflets printed and that this group would be "Forum for change" and not merely a social group. By the next meeting, 175 leaflets had been printed by the West Derbyshire Federation of Mental Health Groups and distributed by members to GP surgeries, libraries, etc as a way of getting the group known.

1999 saw the introduction of the National Service Framework for Mental Health. The guiding principle of this framework was to : Involve service users and their carers in planning and delivery of care. Mental Health Service providers were asked to demonstrate that specific arrangements were in place to ensure service user and carer involvement.

By July 7th 1999, one year after the first meeting, a committee of ten members was in operation, voted for in the June meeting. One member had been invited to the hospital Management meeting and asked them questions about Ward Rounds, telephone and parking problems. These were answered satisfactorily (but answers were not recorded). It was also decided to advertise the aims and existence of the carers’ forum in various publications.

It was decided to produce a "Quality Standards for Carers" booklet on the same lines as the one produced by users for users. It took until June 2000 to obtain funding to pay for printing of the booklet. It was April 2001 before it was announced at the Forum meeting that the booklet disk had gone to the printers but it was October 2001 before we took delivery of the actual printed booklets. It had been hope that there would be a "grand launch" for the booklet, but sadly, this never materialised. Apart from the £500 funding for the printing of the booklet and the original grant of £200 from the North Derbyshire Voluntary Action group, monthly raffles with prizes provided on a rota basis by members, was the only source of funding. The decision was taken that we needed to be lobbying for more funding.

A letter from the Assistant Director of Development and Commissioning, Helen Severns, dated October 2002 (one year later) reads

"We need to ensure that the Carers Forum is based on a firm foundation and that adequate funding is available for you to do this. Personally I feel that this needs to be incorporated into mainstream funding and while I know that there may be some slippage this year, we have to ensure that permanent funding is made available to you. Ruth Sargent and myself need to discuss with the Forum putting a proposal together to identify the amount of funding required to achieve this. We need to do this as soon as possible in order to achieve the timescale for the planning round."

By now, the Forum was being asked to send representatives to "professional" meetings, for the input of carers (National Service Framework). Unfortunately, there were not enough carers to be able to attend every meeting. Carers reported back to the Forum but without any input to the Forum from professionals, this information gave no real direction to members.

In between times, different ways of advertising the Forum were tried - leaflets on Hartington Wing; one member did interviews on Peak Radio; leaflets were taken to GP’s, libraries, health centres and anywhere people were willing to display them.

Important changes in services were being made - Health and Social Services were joined - becoming the "Confederation" but even as this was taking place the big change - joining North and South Derbyshire into one as it is now - Derbyshire Mental Health Services NHS Trust.

The search for Acute Solutions Project (Sainsbury Centre for Mental Health) was really good in promoting the Forum. Carer representatives were taken seriously and our views were acknowledged. This project lasted three years but, sad to say, the Trust is so stretched that our work (that is the Project’s work) needs constantly revisiting to remind staff of what carers need and would like.

Currently: the Forum has excellent representation at many professional meetings, the Secretary and Chairperson being extremely keen to get carers’ views heard. The Secretary was instrumental in getting water coolers provided on each Hartington ward, desperately needed by patients because the kitchens are so often locked which means that patients do not have immediate access to fresh water. These things may not seem important but when patients are taking medication that leaves them with very dry mouths, a fresh water drink or cup of tea is essential.

Compiled and edited from original documents by founder member, Audrey Booth.