• More like us 03 October 2017 | View comments

  • 3rd October 2017 | By David Jolley

    This week we met with Fabulous Forgetful Friends, a group of people all of whom carry a diagnosis of dementia and variable but generally mild to moderate impairment.

    They meet under the umbrella of Together Dementia Support www.togetherdementiasupport.org/ They came to say something about their experience of services, including the process and practice of ‘diagnosis’ and its communication to an individual and family, but also to comment on the availability of support in a life with that diagnosis.

    Several have experience of cancer – either themselves or through a close relative or friend. All declared that they saw much better, closer and responsive work with the symptoms, investigation, diagnosis, treatment and aftercare relating to cancer than to dementia.

    We are shamed. 

    The essence of the problem is that within Manchester, the model is for individuals with possible dementia to be referred to specialist services for investigation and decisions about diagnosis and what is to be done for the future. This is the same model as that for people who may have cancer.

    But whilst people with a confirmed diagnosis of cancer remain under the care of specialist services – doctors, nurses and others – people with a confirmed diagnosis of dementia may experience close and excellent support in the diagnostic process, though our Fabulous Friends told us even this was not always the case – ongoing support is available to very few. The expectation is that Primary care will take over ‘once the symptoms have stabilised’.

    This denial of the need for continued and connected support is hard for individuals and families to accept.

    This is quite right – and they should not accept it, nor should service providers, commissioning organisations or responsible politicians.

    A problem for individuals and groups like Fabulous Friends is to find relevant and effective listeners.

    It has to be that Primary Care and specialist services agree a responsible way of working which does not leave patient and GP feeling they have been dumped by the specialists. The group believes this is achieved in some areas of the country but not everywhere and not here.

    Committed and coordinated healthcare is felt to be a priority provision. From here the best use of family and other support can be negotiated, though the fragmentation of services between the local authority, independent sector and voluntary groups – all competing for inadequate funds – does not make this a journey which can currently be followed with confidence.

    It is encouraging to find that patients and carers are finding ways to support each other and make their observations known through groups which are nearer to their lived reality than the Alzheimer’s Society and Age UK which are much respected but have become detached from grass roots.

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