Hi, I’m not sure if I’m posting this in the right sections if not could someone move it to the correct section please,
Mum has had Parkinsons since 2001, after a time in hospital last year (after having some sort of fit or something and becoming unresponsive, we never really found out what the issue was) from the hospital she was moved to a step down bed in the nearby nursing home. We had already started the ball rolling to get CHC funding before this incident. However with the decline in mum’s health (she lost what little mobility she had) due to this incident and the stay in hospital, she was “fast tracked” and awarded CHC funding, as “end of life” (we were told she had 2 or 3 months to live)
Mum was moved to a nursing home in September 2017, all has been ok (ish) although mum is spending all her time in bed, or is sometimes moved (using slings and hoists) to a semi reclined chair in the lounge area.
Last week we were asked to attend a “meeting” regarding CHC, we attended the meeting and were told it was to be a full (re) assessment for CHC funding. One representative from Social Care (who said very little and didn’t question any decisions) and one from CCG. The result of this “meeting” is that CHC funding is being withdrawn.
We are unsure if correct procedure has been followed, we didn’t know that the meeting was going to be an assessment, so no time to prepare, no chance to involve any “specialists” in our case we would have liked the Parkinsons Nurse involved. The only changes to mum’s health are that the “falls risk” has been reduced, basically because they are not giving Mum any chance to fall (slings and hoists used at all times, which is something mum would never have wanted) She has Parkinson’s dementia (hallucinations etc) and has a very poor quality of life (poor eyesight due to macular degeneration in both eyes so no TV or anything)
We visit regularly and Mum does recognise us, although I’m not sure if it’s just our voices she recognises. Conversation is quite poor with most of it being “nonsense” and the odd “rational” comment. She needs help with every aspect of care, carers feed and give her drinks, nurse gives medication, (sometimes in food because of refusals etc (all ok’d with GP)) It’s very distressing for us and mum.
I would think that all mum’s needs are “healthcare” based and fail to see any “social care” element and feel CHC should still be funding care. Mum was diagnosed with “final stage Parkinson’s” and “end of life” how can that change. As my sister says it feels like we are being punished by Mum living too long.
Any help or advice much appreciated, thanks Andy
(sorry it turned into a long post)
I am new to responding. My Husband was walking, talking eating well until end February when he had the start of an UTI and possible chest infection.He went into Hospital (bitterly regret that) His chest infection cleared within 3 weeks - he was sleeping almost 24/7 - fed with a tube for 2 weeks and as he couldn’t take his Madopar medication he was put on a Neupro patch which I don’t think agrees with him. Anyway the Hospital said he was being fast tracked for CHC funding as he was deemed not to be able to drink and eat enough to sustain him.You rightly say that your Mother’s needs are healthcare based not social needs -which you might have to pay for. There is a booklet to help you challenge and appeal this decision. Sorry I can’t help more. Joan
Hi Joanie and Andy, your posts could have been written by me as they describe practically word for word what my Dad is going through. The only difference being that his infection hasn’t cleared and it has damaged his heart. Antibiotics have been stopped as hospital say they weren’t working, so as they weren’t treating him, a nursing home was arranged. We were told 2 weeks ago he had days rather than weeks to live. Mum has been told the nursing home is being funded for this reason. But I’ve no idea how long funding will last if he proves them wrong and lives longer. Although he is now more mobile, he has developed dementia symptoms including hallucinations. He struggles to swallow so is limited to what he can eat and drink as it goes to his lungs and makes the infection worse. He kept pulling his nasal feeding tube out and we won’t agree to a ‘peg’ in his stomach as he is 87. What little food he eats appears to be his only pleasure. Sorry I can’t offer help, but I will follow your posts with interest as you both experiencing what I am.
Hi You say your Dad is pulling his ng tube out - this happened to my Husband until the ng tube was fitted with a bridle and the tube stayed in place.He is only 78 but the gastroenterologist said a peg or rig tube was too risky for him.
Hi @Andy1963,
A warm welcome to the forum.
I’m truly sorry to hear about your mum’s current condition and the challenges you are all facing in light of the CHC funding being withdrawn. I can’t imaging how distressing this must be for you and your family so my thoughts are definitely with you. I have passed your information onto our health and social care department so they can offer the right information and support on this - I’ll update you with a response following this.
In the meantime, you can contact our helpline and to speak to one of our advisers who are also very knowledgeable with issues regarding funding. Please give them a call as soon as you can on 0808 800 0303.
UPDATE
Hi Andy1963,
I have spoken to my colleague, Matina, who is our Senior Policy and Campaign Adviser and she has asked me to pass the following messages onto you:
Sadly it is a problem that we do hear about from people receiving NHS CHC funding and it is an area that we have been actively trying to influence through our engagement with the Department of Health and Social Care on the recent Update to the National Framework for NHS CHC. As Chair of the Continuing Healthcare Alliance I have raised our concerns with DHSC and NHS England about the fact that people are having their eligibility withdrawn and the distress and suffering that causes for families.
The system is confusing in that it awards eligibility based on the level of care need an individual has across different domains, and when a person’s health needs have reduced there are occasions where funding is withdrawn. However, many people being reassessed are in the advanced stage of their condition, and often near the end of their life with little room for improvement.
If Andy might be willing to share his story to help us campaign I would be glad to discuss that further with him. However, I think the best thing to do at this stage would be to contact the helpline. Ian Adams will be able to speak with him about CHC. You can also look up Beacon- an independent organisation who support people in trying to navigate the system.
I hope you find this information useful and if you’d like to share your story with Matina, you can send her an email at [email protected].
Take care.
Best wishes,
Reah
Hi @Ceebee,
I’m sorry to hear that your Dad has been experiencing a similar issue to Andy1963’s dad’s situation.
However, please feel free to use the information that I have shared with Andy and do get in contact with Matina if you’d like to share your story so we can campaign on your behalf.
All the best and do take care,
Reah
Hi thanks Reah, I look forward to the response from health and social care department.
I don’t know if these CCG people realise how stressful these situations can be, it’s bad enough having sick relatives without the extra pressure of funding etc, I wonder what happens if it was one of their own family, somehow I can’t see funds being withdrawn then.
Get some free initial advice from Beacon and reassurance.
The procedure by chc alone sounds dubious!