Hi has anyone in the uk experience of applying for N H S continuing healthcare. I understand it's a strict criteria,and help is needed to fill in any forms.
My husband has deteriated in the last three months very quickly. His condition P S P / C B D has been going on for five years. I am at the limit of physically being able to care for him,even with help.
I have hoists and bathroom equipment,but it all involves use of my hands which are painful..
Would be grateful for any advice.
Cantussa.
Hi
You need to approach your Social worker (if you have one) or GP or the District Nurse team, to get the ball rolling.
Hopefully they will then refer you, not sure if you can self refer. If in douby it won't hurt to contact CHC directly, the number for your local team should be on line.
Unfortunately I think most of us fortunate to have CHC funding will say it will be a long process, but once the application is submitted, and successful you will have all costs reimbursed.
I had a private company helping me before funding was agreed and I got that money back.
A nurse from CHC will then come to your home to make an assessment and fill in the forms with you.
This is the one time NOT be be positive.
Give them the worst scenarios but obviously be truthful.
They will ask if you want to self fund or have someone manage your funding. I self funded but it was extra stress having to do the returns every month so depending on how strong and organised you are consider handing the management of costs over.
Again the nurse from CHC will hopefully explain all of this.
Good Luck.
Pam
Thank you very much. I shall contact my G P and various charities that may be able to help. Glad it was successful for you.
Hi we have CHC now which is brilliant and it all came about without begging or filling in forms it just happened after my partner was admitted to A&E after a bad reaction to some new medication he stayed in hospital for 2 weeks and the ball got rolling from there really. I have just had 2 weeks respite paid for by CHC , the GP visits us every 2 weeks without asking and lots of different nurses keep in touch often and phone calls from the hospice on a regular basis and of course the home carers are also coming in every day. I am impressed with the service and how quick and easy it all came about.
Hi
We have just applied. It was suggested after my husband came out of hospital again in mid December. The District Nurse came early January and completed the form with me and it has been submitted. Yesterday I received a letter which says that they have received it but due to the volume of application there will be a significant delay before they themselves come to do the required re-assessment. The Alzheimers Society have an excellent information brochure called 'When does the NHS Pay for Care?' which they will send out to you. Good luck AlliBee
We have had an application turned down in Dec but have appealed and waiting to hear. It is really hard to get now but it does vary from area to area. We were told John does not have a primary health need. Best of luck. Paulinex
Good luck with your appeal.
We were turned down in November - he didn’t score high enough in certain areas despite being unable to move unaided, which of course is all getting worse. He was scored down for being compliant with help ....(maybe something to take into consideration) perhaps research the scoring criteria. It was a long process and we felt really dejected when we were turned down as he needs so much help, it’s an illness, but still a tick box exercise.
Hi have you contacted Beacon. They have sent me lots of useful info. Also suggested I keep a daily diary of all care given. I am already surprised at the actual amount of time each day I am caring.
Perhaps worth trying again.
Good luck.
There is a document on the PSPA website called NHS Continuing healthcare (CHC) Guidance Notes for Health & Social Care Professionals which I found very useful. I printed it off and highlighted every area that affected Mum (there were a lot), the GP reviewed it & found it very useful, asked me to send a copy to the surgery to add to Mum's notes as it helps explain to anyone the complexity of PSP. She also said to think of the risks of the worst day, so when Mum is choking, there is a high risk of aspiration pnuemonia and looking at it this way gives substantiation for higher level scores. Shared the document with the Community Matron and she has used it successfully since to get funding & found it very useful. It really help with showing how PSP impacts across domains, the unpredictability, things which as carers we takes as read but need to be spelt out to get the best outcome for CHC. We are currently waiting to hear from our submission but are hopeful. Good luck with yours.
My username says everything about my family's experience with CHC!
As much depends on the quality of INFORMED, SYMPATHETIC professional help you get with drafting your CHC application and WHICH CCG decides on the application as on the precise health needs of the patient, I feel. In your own interests, you must research the CHC criteria and what evidence is considered appropriate, also what the national framework requires. Reading up what patients and patients' families say about the whole process is very enlightening.
GOOD LUCK!
Thank you. Have more idea now what is needed.
We have had a long history of CHC difficulties and I suggest you look at the `Care to be different` website. If you feel you need further advice, try Beacon who are funded by NHS England but give free advice over the phone for a number of hours which can be spread over several calls.
Good luck.
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