CHC funding

[Foxy25]

We had our review 3 months ago . It was so stressful ! It seemed as if the Nurse Assessor was determined to downgrade our needs despite the views of the three professionals supporting us .

My husband needs 24 hour care and has a lovely team to look after him . He is very heavy for me to lift & I currently have two broken ribs ! We are still awaiting the outcome of the review which has gone to a panel and I will definitely appeal if needs be . I would be grateful for help with this

I can’t understand why funding is called continuing if it isn’t ?!

I am so worried .

Foxy25

[messier]

I hope you mean the review was 3 days ago rather than 3 months! Otherwise you should have heard back by now. The outcome usually goes to a panel so that's to be expected. In fact the panel can disagree with the assessor. For my mum the assessor thought she wasn't eligible but the panel said she was. Fingers crossed!

[Foxy25 in reply to messier]

Thank you Messier 🤞🏾.The review was 2 months ago , 14 months after funding was initially granted ,

I will try to stay positive .

Your reply helped !

🙏🏽

[messier in reply to Foxy25]

Oh my that's a long wait! Probably best not to chase on the basis that it's continuing in the meantime!

[David750]

Hi Foxy25, please keep the PSPA informed of your difficulties as they are assembling evidence of successes & failures with CHC funding. They are endeavouring to raise awareness with the medical authorities of the implications of PSP & CBD. Ask to speak your Care Navigator for your area. All my very best wishes.

[Marazion]

It might be different in your area but if you are in receipt of CHC funding already and have the three month and annual review you only hear if funding is withdrawn and do not hear anything if funding continues. The panel ratify the review decision. That was our experience in south west.

[Rose1sunflower]

hi Foxy25

That is a long time to wait. When we had our initial assessment we apparently had been informed via email but they sent so much material - in depth report, pamphlets, other letters that the actual confirmation letter was not included as the email was so long! I rang them and the lady emailed the letter separately. It is interesting in what Marazion says, if it is a review, the funding just continues.

[Licquoricelover]

That is terrible and I feel for you. Carers have enough stress on them looking after our loved ones and this is totally unnecessary. We have only just been awarded CHC but if it happens to us I will try and involve our local MP.

More awareness in Government is needed for these dreadful diseases and the bureaucracy involved in fighting for what should be automatic entitlement for life just like severally disabled people get through the benefits system.

I wish you good luck and pray you do not have to appeal. Ridiculous system!

[Harshacceptance]

it’s a broken system for sure. I don’t fully understand where you’re at with CHC, do you have CHC funding in place already? If so a 3 month review is normal to understand if the package of care is meeting the needs or it needs to be adjusted.

As I’ve thought many a time, these dreadful diseases are progressive so people are not going to get any better so your DST scores should level or increase over time as I am sure we would all wish for our loved ones to become miraculously better.

I would take it as everything is the same if they have not been back in touch. Perhaps call your CHC manager who looks after your care package?

I would love to say our experience with CHC was seamless however it was far from that and a constant battle and advocacy for my dad and mum as his primary carer.

Wishing you the best 🙏