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to hear about your mum’s current condition and the challenges you are all facing in light of the CHC funding being withdrawn.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.
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Alliance I have raised our concerns with DHSC and NHS England about the fact that people are having their eligibility withdrawn and the distress and suffering that causes for families.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has across different domains, and when a person’s health needs have reduced there are occasions where funding is withdrawn.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@example.com.