funding advise

[MotherwithPSP]

A little overwhelmed and looking for a little advise on how best to help my mother.

My mum has been diagnosed with PSP in July 24 after wrongly being diagnosed with FTD for 4 years.

she spent 1 year in hospital due to no home care being available in her area and then regretfully we were somewhat forced into a care home. They are now trying to charge us full but I believe she should be eligible for CHC funding. But being met with a fight from social.

She is currently in a dementia care home that can not care for her needs and we keep being slapped with escalating bills. The care home have said they anre not right annd even requested extra funding themselves to try annd anccomodate her. I’m fighting for a move to nursing but feels like a cat and mouse as if I can’t pay they won’t move her. unfortunately she Is now in the latter stages with a 12 month prognosis and clearly her needs are being overlooked.

Additionally and sadly she also suffered abuse in her previous home to which legal cases are under way. I feel the social don’t want to touch us with a barge pole and are hoping we just go away.

I don’t know what to do. Every corner we turn we have to humanise her again and again to try and be heard and get some co-ordination in her care. She’s is fully cognitive but more and more locked in and I feel like I am failing her. . All the while her needs are not being met by the people who are opposed to help.

Any advise would be greatly appreciated , how do I get her into a good nursing facility for PSP, her needs met and get them to co-operate?

[MotherwithPSP]

ps excuse dyslexic typos

[Kelmisty]

Have you applied for CHC funding yet? This is NHS funding so Social Services don’t make the decisions. I’d contact PSPA and ask for the advice from them on how to do this, the carehome should be able to support the application. Also I would suggest speaking to her GP as they can support the application too.

If she is under social services, then if she has savings over £23500 (ish) then she has to pay her care bills until she hits that level or below then they have to pick up the costs. If she has to pay for herself then you can move her, but nursing homes in general don’t understand PSP, but a good one like the one my Mum is in will accept training from the PSPA as we did on Tuesday together.

Depending which council you are under depends on their approach to placements, my only advice is to be a pain in everyone’s backside and send letter after letter to everyone, be difficult and fight for what she needs. I think the battle you have is that she is safe in a carehome in their view so the battle is harder than starting from fresh.

She should be in a nursing home ideally as her medical needs will continue to increase as she worsens.

[David750]

Hi Motherwith PSP, I agree with Kelmisty please phone the PSPA Helpline (pspassociation .org.uk) ask to speak to the Health Care Navigator for your area. She will be able to advise on CHC applications. Successful applications usually involve a health care professional's assistance as they know the best way to phraise answers to questions. The PSPA have many forms of support for you (even education of care home staff) and your HCN can explain. All my very best wishes on this difficult path for you.

[CJFreckles]

Dear Mother with PSP

I'm so sorry to read about your situation. The whole scenario is awful and it's disgusting that they have also abused her.

Firstly, the local council as a duty of care. Demand they offer her a senior social worker who is going to be sympathetic to your situation. Secondly, you can then start the process of the chc funding application- or ask your mom's doctor. However I would say be prepapred-for it all to drag on. I am happy to send you all my notes if you drop me a direct message from my dad's case but I did have one hell of a fight on my hands and I had to appeal . Finally, and also because of the abuse aspect, write to your MP and demand a meeting with them. This will also mean you can tell them about the horrendous care home and there may be something they can do to help or support in this situation. X

[lunarquasar]

Hi If you want to find out more about CHC funding look at my previous posts under lunar quasar as I have had to go through this for my wife although she is at home and not in a care facility.

[Scottoppy]

CHC Funding is the answer, talk with your social worker or district nurse or doctor. Apply for CHC funding which with her diagnosis would seem a sure bet. A few hoops to jump through but the outcome is worth it. PSPA can help too. Good luck

[MotherwithPSP]

thanks you all, I really appreciate you taking the time to respond to me. I certainly feel less alone in this maze.

I should also mention she is in Scotland and it looks like PSPA and CHC are almost non existent in that region. It certainly seems like a long battle ahead.

[Kelmisty in reply to MotherwithPSP]

Just to say PSPA access for me has mainly been over the phone. So they can suppor you they do have a group in Scotland according to their website. Probably worth speaking to them.

And it looks like CHC in Scotland is different, this seems to be a hospital based clinical complex care - where social services + NHS are involved - hopefully someone from scotland can help you on this, as it is different to the UK system.