1. Thank you for inviting me to speak on behalf of learning disability England. We are a still a young organisation, we launched in June this year and I was bestowed the honour of life time membership. I also am a fellow of the centre for welfare reform. I have never spoke at the full conference or the fringe so I am feeling a little nervous
  1. We are here to encourage the party to take sensible decisions on making things right and fair especially when we come to Health policy. We at learning disability England work for better services, and are happy to work with other organisations where appropriate. The draft policy that my colleague Simon has drawn up for our hosts today regarding social care and health is very sensible and sets out the problems and pitfalls that are the experience of accessing health and social care from the point of view of someone with a learning disability. I personally get no help from Social Care, but I have a great GP who takes the time to explain any treatment, and why. I have dyslexia and dyspraxia, which makes life quite confusing most of the time. I suffered a heart attack a few years ago, and this still affects me. I am very lucky as I have good family support, and have needed this when dealing with the perils of the Department of Work and Pensions.
  2. I am a twin, and sadly my twin passed away last year. He too had a learning disability, suffered heart problems, and very poor mobility. He did receive lots of help from the primary health services, but did suffer severe pain, whether imagined or real and presented himself at hospital quite often. This became a problem for the hospital, and on one occasion he was told that if he didn’t stop attending regularly they would refuse to deal with him. After intervention by family, the hospital agreed to implement a programme of support. My brother would produce a letter written by a consultant, setting out what steps staff should take in treating him, bearing in mind his disability. This would also take away the need for my brother to explain his condition to staff. His hospital computer records also set out how to treat him. Sadly, many frontline staff would ignore or refuse to read the letter and records, demanding that he verbally explained his condition, something he was unable to do clearly. He, like many people with a learning difficulty find organisational systems totally overwhelming and confusing. He did receive help from Health Service Learning Difficulty Services, but this could only support and help him weave his way through these organisational systems. Although he had a Care Budget he was not allocated services from Adult Social Care. Domiciliary help was declined, and we had to employ someone to keep our home clean and tidy.
  1. Services for people with a learning disability, and all other vulnerable groups, have been cut back drastically through budget cuts. Care and Health are not a business; they are essential services. Profit through care maybe thought to be cost saving, but much of the care and health budgets go towards private profit. We all need to ensure that the scandals of Winterbourne view and Southern Health stop, and bad social care and health practices should not be viewed as normal or acceptable.
  1. So the things learning disability England would like and future labour government to make happen
    • Enforce the Care Act 2014 in making sure that local government have the money to fund individual budget packages in full.
    • That everyone is given the right service they need to help them manage their disability and that a partnership should exist between the service user and service provider in determining funding for services, with users, providers, carers or lay person having equal weight in decision making.
    • That people and organisations who continue to abuse, reinforce bad practice, criminally divert care funds or any other act or omission against good care practice receive some form of legal consequence.
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One Comment

  1. Thank you Simon Cramp, I have today learned of learning disability England
    through what you have written here and think that as an elderly parent carer of son with a learning disability and autism, should have been knowing
    some time back.
    Is it not possible for Learning Disability England to become more widely known, what are you doing to achieve this as membership relies on such is there anything that we can do to help regards this at our locality of Wokingham/Reading.

    Healthcare in our area for people with a learning disability/autism and challenging behavior, is poorly understood and General Practitioners
    support none existent and discrimination for families whom have
    a member with a learning disability whom seek support from their GP
    are dismissed from their accepted practice and pushed around by
    other practices that they are allocated to and told their medical records go missing when approached for medical evidence of disability as per required by the Department of Work and Pensions.

    Leaving the person with a learning disability without welfare benefits and with out supportive appliances or aids as their General Hospitals also
    do not understand or wish to make reasonable adjustments for accommodating
    persons on the autistic spectrum with a learning disability.
    Hard enough when a younger carer and able to work, but less fortunate for
    those of us that are older carers, on a pension to find money for our dependents, on top of
    this comes
    the higher costs of heating for people with a learning disability that cannot
    understand the need for turning out lights, closing doors or wrapping up warmer adds to
    hardship for both the carer giver at past pension age and the person with the learning disability all
    equals – a not very Merry Christmas.

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