Mum PSP , continuing health care.

[Kaylewis]

Hi all , mum died last week and we did get continuing health care for her last six months. Today CHC phone me and ask if I would still like to appeal for the two previous applications I put in, we had to pay ourselves for two years of care at home. I feel so tired ,and am not looking forward to the process but iam going to fight hard for everybody that has PSP, and iam going to do all that I can to make these people aware of what you are going through and have been through, and the amount of care u need through a very unpredictable disease. Xxxx love to all.

[Brenive]

Well done Kay .you paid the money.. you should have back...l just hope it will be easier when we need it for my husband....thinking about you and your family at this sad time......Brenda xxx

[Kaylewis in reply to Brenive]

Just post if u need any help . X

[Tippyleaf]

So sorry for your loss, well done for following up with the CHC appeals- I know it takes a huge energy at a time when you must be totally physically and emotionally exhausted

Take care of yourself

Love and hugs Tippy

[Nanny857]

I so admire your determination in such a difficult time and you are thinking of others. My sincere condolences on the loss of your dear mum. Lots of love Nanny857xx

[Inparadise]

So very sorry for your loss.

[AJK2001]

Thank you for thinking of the rest of us at what is such a sad & difficult time.

[Katiebow]

Good on you Kay, I sincerely hope that you get back what was denied in the first place. You should not have to be faced with this battle at such a sad and difficult time but they should not be allowed to get away with putting very sick people and their families through so much stress, shame on them.

Love Kate xx

[Willow_rob]

Well done Kay, I wish you the best of luck and I am sure many of us would offer help. They asked you therefore they must think you are entitled. I have a very sympathetic matron who helped me get CHC funding and I am meeting with her and our CCG care coordinator next week so I will quiz them about the process. I thankfully only had to pay for the first six months of Mary's care. Keep fighting for what is rightfully yours. Rob

[Ettavb]

I’m so sorry to hear of the loss of your mother.

[LuisRodicioRodicio]

Thanks. Big hug.

Luis

[NanBabs]

Sincere condolences for the loss of your Mum but well done for still keeping up the fight for CHC payments. My husband died at the end of May and I am still waiting to hear if we have been granted the right to an IRP (Independent Review Panel) appeal against the withdrawal of CHC after 2 years of funding !

x

[Kaylewis in reply to NanBabs]

Keep fighting, I will keep all informed. X

[BattlingCHC]

My Mum also died recently while the 3 year fight to get her CHC funding was still underway. Ironically, the 'phone call I received shortly after her death suggested the CHC team were now significantly worried we might win her case …

The main point of this post is to say - please continue with your application but tell the CHC team they must pause the process for a little while to allow you some recovery time after your bereavement. After all, it's THEIR delay which means the CHC process is not yet complete after a considerable amount of time.

[Hiking13]

Good for you it’s disgusting that you weren’t given it in the first place. Unfortunately I have discovered that there are too many useless pen pushers that get in the way of people getting what they deserve. I am lucky as we got CHC funding back in October but still have got Steve home yet but hopefully on Monday. We were given 24 hr care but our care agency think it’s fine not to cover Christmas Eve and Christmas Day I have fought for this as Steve has a tracheostomy needs constant suction and nebulisers on top of the mobility issues etc etc The agency have reluctantly given me cover by a partially trained person so I will have to take the lead in the more complex care issues tracheostomy Care, suction and nippy machine which is fine and I will do it but honestly who do these people think they are 24 hour care is 24 hour care......fight all the way and don’t give up. Thinking of you and sending big hugs

Love Sarahxx

[Aprilfool20]

Good on yer! And thank you for continuing to fight our corner. Until more professionals know about these awful diseases they will continue to get sidelined.

Jayne could