Hospice Care

I acted as next of kin for a good friend of mine who had been diagnosed with a Class IV brain tumour. He collpased, was taken to A&E and discharged a few days later to a London Hospice with the diagnosis of 'days to live'. Two months later he was still alive though in extremely poor condition and the Hospice, along with the commissioning CCG, decided that he should be moved to long term care in a nursing home where he died a week later in truely appalling circumstances. I filed a complaint with the commissioining CCG in Oct 2015 and it is now April 2016 and still no response from the CCG other than to tell me that the nursing home staff involved with his paliative nursing have gone on either long term holiday or sick leave. That aside I have two issues, firstly how many patients have been summarily ejected from their hospices for not passing away within a requisite but unspecified amount of time given that a statement on the NHS Choices website which I quoted in my letter of complaint, stated 'Hospices provide care for people from the point at which their illness is diagnosed as terminal, to the end of their life, however long that may be' was removed from the NHS Choices webpage soon after I had made my complaint. Secondly, I know realise that I face the full force of NHS obfuscation and evasion as I try to get answers to my complaint. I would like to hear from those who have been through similar events as I am beginning to believe that I have stumbled into an issue that is never discussed on any of the other websites that I have looked at but is a real cause for concern and heartbreak for relatives. I do not want anyone to ever go through what happened to my friend and colleague, he did not deserve it and it is only with the help of people who have received similar treatment can this practice be stopped.

  • Sorry about your friend, sounds like you all had a horrible time. Maybe your MP could help.

    My mum went down hill with her cancer quite quick. The nurse said she'd get help from nurses from the hospice. But said be 10 days, not what you want in a time of need. Nurse at the hospital couldn't promise they would take her at hospital. It was only when I phoned GP got them moving.

    Makes you worry about when we are old ill. Not very good country if we can't get looked after when dying

     

     

  • Hi,

    I'm appalled to hear what your friend went through.

    I've not experienced this sort of situation directly, but I'm afraid it was widely predicted when the Health and Social Care Act forced a top down structure onto the NHS replacing the Strategic Health Authorities and PCTs with CCGs which are in the main run by GPs. The result has been a postcode lottery of services, with hospices and Mental Health services suffering in many places. In the Northwest this week, one CCG announced the introduction of a Hospice at Home service on the same day as a neighbouring CCG announced their Hospice at Home service was being terminated due to funding cuts. There is no strategic approach, CCG funding is being cut at a time when demand is rising and services are sufferinC.

    Sameboat has suggested contacting your MP, which is a good idea. It might be worth contacting your local and County councillors too. The services provided by your CCG should be being overseen by the Local Authorities Health and Well-being Board. This seems to be exactly the sort of scenario they should be interested in. You might also want to contact the Care Quality Commission*, who are in charge of the continued registration of your local NHS and hospice services.

    Good luck
    Dave

    http://www.ukqcs.co.uk

     

  • Thank you for your advice, it is very much appreciated. I have already filed a complaint with the Care Quality Commission and also in discussion with the Ombudsman about the constant delays with the CCG response to my complaint .Following your suggestion I looked up my Local Authority Health and Well-being Board website and discovered what amounts to an impressive 42 page 'mission' statement which, unfortunately, contains no 'complaints' section. I shall spend the next few days trying to identify the procedures for getting my experiences heard and hopefully, acted upon. What further angers me was that the meeting I attended with the CCG and Hospice medical staff to discuss my colleague's future care was, in reality, their presentation to me of a 'fait accompli' whereby he was to be ejected from the Hospice totally regardless of the thoughts or feelings of his family or relatives who, I discovered, have absolutely no say in the matter at all. A hugely contradictory stance to the Hospice's own 'mission' statement printed onto a 6' x 2' board and proudly displayed on the wall in the reception area. Oddly enough it contains no small print about overstaying one's welcome or meeting deadlines!