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Jackie Clarke is a Family Carer working for improvement and change for over 38 years and counting. She is the Family Carer of her adult son who has Autism & Complex Needs. She has two grown children and two grown grandchildren.

This is a small part of her journey as a family carer from 1972 – 2010

(NB: But there is whole other story, not told here, about her professional life in the theatre)

Starting at the beginning of the 1970’s with Family leadership in nursery provision for the 'differently able’ d. Setting up Parent / Staff Ass. Support for Parents & fund raising

Then on to Education - Governor of Special Educational School throughout her son's school life. Set up Parent / Staff Ass (Secretary) Support for parents /staff also fundraising.

Founder member of ‘Campaign for the Mentally Handicapped' in the early 1970’s, Highlighting the plight of people living in long stay hospitals;

Then the ‘ Action Group’ consulting and planning about the closures of long stay hospitals, and getting good community services for people leaving them and people already living in the community at home with families.

Founder member of ‘Hartcliffe Friends of the handicapped' Self support for families running play schemes in the holidays for siblings and children with complex needs.

When a school governor at New Fosseway School Bristol, set up very first feasibility study for family respite, which was then taken up by social services and was used as a model, now also developed as an adult respite service. This is now standard practice in respite provision

Made the first ever approach, with the Head teacher of New Fosseway School , to the further educational college South Bristol, to have the first ever further educational course for school leavers with a learning difficulty. This took a lot of relationship building and lobbying to achieve. This is now standard practice.

Family Carer rep on Community Health Councils special focus on (as was then commonly termed) the Mentally Handicapped; As a result of our constant campaigning to government - Local implementation groups came into being, so did the government paper ‘Valuing People’ the implementation groups are now called Learning Difficulty/ Disabled Partnership boards .

Family Carer Representative on Learning Difficulties partnership Board for many years. (now retired member)

Founder member ‘Inclusion South West’. A group of ‘thrivors and survivors’; people with a passion for inclusion and self determination. Self advocates from the fields of mental health, learning difficulty, autism and family carers, professionals and movers & shakers.

Founder of ‘Trusts R Us’ a group of families who are helping their loved ones receive/ run their direct payment for care & support with a family trust and circle of support. Sharing knowledge and assets with each other and mentoring others who wish to do the same.

Workforce Confederation. S.W. Regional Family Carer Representative

National Workforce Reference Group. Family Carer rep

Key mover in getting the first University Accredited Courses for People with Learning Difficulties & Family Carers for example Person Centred Planning ; Facilitation; Going on to other developments = Train theTrainers - Training / teaching; Public Involvement:

Founder member of Inclusion South West.

Visiting lecturer at UWE teaching on Health & Social Care modules.

Member of UWE - HUB (University)

Member of SUCI - UWE - Service Users & Carers Involvement.

National Challenging Behaviour Strategy Group

Regional Challenging Behaviour Strategy Group.

Member of LINK Self Directed Support Group ( Direct Payments etc)

Member of Circles of support for service users and also family carers.

Her philosophy is this:

“ What will it take?’ - ‘Does it exist at the present time?’ - ‘If it does, how good can we make it?’

If not - go and create it. “

Part Two.

Jackie Clarke

Working for improvement and change for 36 years, Family Carer of Adult who has Autism & Complex Needs

Founder member of Inclusion South West. A network of people from the field of Learning Difficulties and Mental Health including 'thrivers & survivors', families and professionals, working in and for leadership and inclusion.

Founder of ‘Trusts R Us’ a small group of family led trusts supporting their disabled relative to receive and run a direct payment for their care and support. Most of the trusts have teams of over eight people to manage.

This is an on going life's work of getting a good life for people who have been historically excluded from things we all take for granted, there is a great upward trend, but still loads to accomplish.

In my other life I am a singer and musician and I was a dancer,

I have two children a son and daughter, two grandchildren.

I have been a member of St Augustine’s since it was built, before that St. Nicholas, Whitchurch. I was confirmed in Manchester Cathedral along with four other members of the cast whist playing at the Manchester Palace Theatre, in the late 1960’s.

I am working with Rev Ian Wills (Soundwell, St Stephen’s) producing a series of Rock Communion’s which he very skillfully and creatively writes. Currently there are three finished

i.e.: ‘Margins of Eternity’ - ‘ Have you seen Him?’ - ‘Meet me in the Light’

This is very much a collaborative effort of all concerned, musicians, technical support etc.

This is a bit of me, but as the saying goes, it is not over till the ‘fat lady sings’, well I sing and I’m getting towards the other bit!

Jackie Clarke 09/12/20