Applying for NHS Continuing Care

[maren]

For the last two years I have been caring for my mother ,who has advanced vascular dementia ,in my home.Her condition is such that she now requires care 24 hours a day ,something which I cannot physically provide.I have been advised to apply for NHS continuing care funding to help pay for assistance with caring for my mother.To receive this I have had to fill in some large forms which have to be submitted to "Panel" ,together with corraborative evidence from Doctors/district nurses/nursing agencies etc ,whom will decide whether my mother and myself are deemed needy enough to qualify for help.Does anyone know what i am to expect from this or had experience in applying for it.

 

[BeckyJan]

Hello:
Yes but our first application was submitted by an Assessment Ward (Dementia unit) - this was handled badly and it was refused. By that time my husband was in a NH and I appealed - then I had a 'peer group assessment' - nurses from the CC Team outside our area. This was successful.

I am curious who advised you to apply and surely you should not be completing these forms yourself. Ideally you need to be familiar with the National Framework which is a long complicated document spelling out what and how CC is applied.

Have you got a good Social Worker or CPN - ideally you should be supported by one of these.

I am not good at pasting the link here but someone will do this I am sure. Otherwise google National Framework and be prepared for some hard study.

There is an excellent support team from the Alzheimers Society. I emailed Mike Pearce and he put me in touch with one of their supporters - she was excellent. If in doubt ring the Alz. Society helpline.

Good luck Jan

 

[Brucie]

surely you should not be completing these forms yourself

yes I agree with that!

I have been involved with applying for NHS Continuing Care on three occasions for different people and family needed to complete no forms at all in any one of them. There was always a multidisciplinary team involved who did it.

In all cases, the person concerned was in an NHS facility, of course, so the NHS people concerned had an interest in freeing up resources.

If we had been at home, it might have been a different matter.

 

[maren]

Thanks for your reply. The reason I have been filling in this assessment is because the Social worker said it would be better for me to give my views as I am her main carer, and I can therefore give the best account. However I still am having to get an assessment from the District Nurse as my Doctors have been totally disinterested in my Mother and very reluctant to come out even when she is ill. And of course any funding would presumably come from their budget? My Social worker has put in her views, and my Mother carers (who she currently has twice a day at her expense) have put their report in as well. As for my Mums CPN well she has said that they no longer feel that they want to get involved as my Mother is so frail and her needs should be met by her GP. I apparantly now have to call the PCT to arrange a time for me to go and present my case to a panel. I must add that my doctors are refusing to prescribe any medication for her dementia other than the anti phychotic drugs which do not help at all and have adverse effects on her and are impossible to get her to swallow now in any case. All in all I feel like my Mother has been abandoned and they are just happy for me to continue to take total responsibility.

 

[BeckyJan]

Hi Maren:

I am copying a paragraph from the Alz. Soc. website. I do recommend you email the group and hopefully you will be allocated a supporter who may help you.

It is hard for us here on TP when we know so little of your Mother's situation. I do think you need advice on how to emphasise the 'health needs' of your Mother.

if you are challenging a continuing care decision and would like to be put in touch with the network please email campaigns@alzheimers.org.uk or call Alzheimer's Society dementia helpline on 0845 300 0336.

You may not at this stage be 'challenging' a decision but if you can prepare yourself now to provide the right sort of information then maybe you will avoid an appeal.

Good luck Jan

 

[Marianne]

This is a link for the National Framework and the Decision Support Tool for NHS Continuing Healthcare.

http://www.dh.gov.uk/en/Publication...tions/PublicationsPolicyAndGuidance/DH_103162
http://www.dh.gov.uk/en/SocialCare/Deliveringadultsocialcare/Continuingcare/DH_073912

I would request a full multi-disciplinary Continuing Healthcare Assessment of your mums healthneeds by contacting the PCT which would be best done in writing mentioning CHC Assessment. The PCT should then contact you and arrange a date for a panel meeting. A PCT nursing assesor will be assigned to you and she will arrange the assessments and when finished will present the findings and your statement at panel.

It may be possible for you to attend the panel meeting but not all PCT's allow this,(mine didn't) It is definately not your responsibility to chase the District Nurse, CPN Doctor etc to carry out an assessment nor is it your responsibility to take it to panel.

The CPN should be willing to assess your mum but I am sure her views will be sought and included in the PCT's assessment. The PCT Assessor should involve you and also make you aware of her findings and scoring before taking it to panel.

 

[maren]

When I contacted Mums CPN regarding her medication some weeks ago she told me that they would no longer get involved with her as she is so frail and now bedridden and felt any medication should be prescribed by her GP. However, our GP is very reluctant to get involved and on a recent visit suggested that I just did my best and no one would blame me if anything went wrong she certainly did not offer up any support other than this.In fact it was a fight to get her to prescribe antibiotics in liquid form to treat Mums urine infection and took a heated discussion in order for her to do this, she expected me try to administer her medication by rectum if she could not take capsules. Obviously I refused to do this as I am not trained or able to do this. I am therefore now asking the district nurse to asssess Mum as she is the only health professional that I am in contact with.
mandy :

 

[maren]

Oh by the way I have never met Mums CPN I didnt even know her name as her last CPN left over a year ago.

Mandy.

 

[BeckyJan]

Hello Mandy:

Just had a thought. You said in your first post that you were to submit the forms to Panel. I have you got their address/phone no.? I think it would be good to have verbal contact with the Senior CC Administrator. I did this here but luckily the Care Home Manager gave me a contact from which I finally found the head bod. She was wonderfully helpful - and I hope you could get the same treatment.

Just say that you have been left with this to cope with on your own and need someone to come and assess your Mum from a healthcare view. Will the District Nurse help you?

I do feel for you as the few things you have described about your Mum sound that she is a cut and dried case. When doing this you may be able to backtrack to when your Mum first needed Cont.Care - it may be backdated.

It all gets so so complicated and I am sure you have too much on your plate - thats why I feel the email address or helpline should help.

You seem to be doing such a wonderful job.

Jan

 

[maren]

I have taken on board all your thoughts and advice and would like to thank you all. from these few responses I have been given more help and advice than from any of the professionals! Thankyou so much it helps to know that other people care as at the moment I feel very isolated and browbeaten.
Mandy.