For the last 2 years and a good deal more I have been seeking professional support concerning the treatment that my daughter and I have been receiving from our NHS CCG. I have approached towards 300 legal practices, disability organisations, charities and similar for that help. These include Mencap, Scope, Carers Organisations and parliamentary officials both local and national. Sadly there is no-one who can make money out of a pensioner who has given 35 years to giving care to a person born with profound and complex disabilities and there is not one person who will address this injustice on the behalf of us and of any other families similarly affected. I collapsed in November 2017, died and was resuscitated in the ambulance, then received a haematoma on the brain as a result of questionable NHS care. I have been home since mid-January, still very fragile and housebound for now. I understand from personal sources that my daughter has been taken out of the County for care but until one week ago I received no contact of any kind about my daughter’s whereabouts or condition at all. Now she is totally unprotected.
Hello SummerMother
You articulate the fears many families face, only in your life they have become a reality. I fear that I have nothing to add to your existing extensive research on possible avenues of support.
I thought of IPSEA who can be super but your daughter may be too old for you to qualify for help: https://www.ipsea.org.uk/
My other thought was that Changing Our Lives directory Jayne Leeson would be better at answering your query than me, https://www.changingourlives.org/
This sort of ‘treatment’ is totally unacceptable and has to change. I am currently part of a rapidly growing team of individuals championing the adoptions of a set of Standards for the care of people with PMLD. Were these to be adopted the sort of ‘treatment’ you have received would be halted. You can access the standards freely on the www.pmldlink.org.uk website. They describe what care should look like so could be a useful tool in your fight.
You should not have to fight though. You have done an extraordinary job caring for your daughter for 35 years, I imagine you have brought her up feeling secure and confident. Hopefully that resilience you have built into her is helping her to get through this time of separation. You are clearly a strong person yourself, that will have worn off on her.
May you both be okay and be reunited.
Best wishes
Joanna Grace
You may find some help from someone on the website:
I suggest you get in touch with VoiceAbility they should be able to advise you.
Thank you for that suggestion. I have written to them.
Thank you for responding. Yes, my daughter is 36 so cannot be helped by IPSEA. I have looked at the Changing Lives website but, like so very many, it only seems to offer advice and I am afraid that I do not need advice as I am already aware of the failings to follow the regulations but I am not the offender! However, I will try to write directly to Jayne Leeson if I can trace her to advise her generally of our situation. And I am already subscribed to pmldlink.
Thank you for this – I have written to them, although again, there is any number of organisations and websites etc. offering advice and information but that there is at this moment not one single person in any one of them who will actually DO anything at all.
Thank you Scotrob, I did contact them months ago but have written once again in order to keep the issue raised. However, yet again this is all about advice and telling me what I should be doing……