CHC - when is the right time?

[bichonbear1]

My mum has CBD and I suspect in the mid stages. Dad is full time carer and I am there to support him as much as mum. I have power of attorney (health and financial) to take off some of the strain from dad. I guess we all just get on with the daily care aspects and it becomes part of our “new” daily lives so it feels a little blurred as to when a CHC assessment request is relevant. Can anyone provide me with guidance or a view as to when applying for an assessment will be relevant? Is there a particular trigger or care level which would make it appropriate? Any steer would be a great help. I have carried out a lot of research on the process and prepared for the tough journey ahead on this but just want the timing to be correct and this is the one area I am struggling with understanding. Thank you.

[AliBee1]

I am so sorry about your Mum. There is 'no right time'. So many of us have been turned down and others have been successful. It does feel very much like it is a postcode lottery. My husband was turned down and then fast tracked successfully 6 days before he died so it was too late. Kevin_1 has some brilliant helpful posts on this site so I suggest you look at those. Just be warned that it is a pretty negative experience to go through as you have to make sure that the worst scenario is recorded all the way through the paperwork, and like most of us you probably hang on to the positive rather than the negative. Good luck to you and your Dad. Big hugs AliBee xx

[bichonbear1 in reply to AliBee1]

Thank you and I am sorry to hear of your experience.

[Tippyleaf]

Dear BichonbearI s agree with all Alibee explained.

We applied when care needs seem to take a huge hike. The check list and assessments were undertaken by Hospice staff ( not fast track) and we were lucky to get funding on first application. But like you I had done my research. Run through the first check list yourself can you give concrete examples/evidence for each domain if you can now is the time to start the application process. Keep a file of Physio/OT /SALT reports , Neuro clinic letters/A&E admissions. Keeping a diary of daily life 24/7 fora week is also a really useful snapshot of the level of care needed. Record as much detail as possible to give a really clear outline of day to day challenges. Be aware this is really upsetting to read, we get on with just coping/managing but when you see the level of care needed written down it is a tough read.

I also spent time explaining to my hubby in the days before the initial checklist meeting why I was going to be focusing on the negative as I knew this would be really hard for him to hear and indeed it was very upsetting for him to hear me - as he saw it belittling him!

Beacon and PSPA have some good resources and search on this forum for other handy hints.

Good luck with your application, it is a long tough process with a bit of a postcode lottery. But if successful will make a massive difference - well it did for us.

Love Tippy

[bichonbear1 in reply to Tippyleaf]

Thank you so much for your advice

[DoingwhatIcan]

I'm so sorry for your mum and the family. It's such a hard time. The others have mentioned the checklist that the NHS use to assess CHC funding - we found it really helpful to read through it and really understand where my dad was in all categories. It will basically force you to look at every aspect of the care needs of your mum. As the others say, just because you think a certain thing, doesn't mean the 'powers that be' will agree, but it gives you a good guide and base for the fight ahead.

Here's the link to the form: gov.uk/government/publicati...

All the best to you and your family xxx

[bichonbear1]

Thank you for your guidance

[ProgRock in reply to bichonbear1]

Again like AliBee, we applied twice for my husband and was unsuccessful. I was his sole carer. They said they would revisit 12 week later. 6 months later on the 3rd time he had moved to end stage a few days before this Christmas and they fast tracked it and on the same day approving 2 carers 4 times per day but due to shortages there were no carers available. H2H - Hospice 2 Home stepped in and he passed away on 5 January. The Hospice and adjoining Sunflower Centre have been my rock for the past 3-4 years I owe them everything. Keep pushing and remember to answer with worse case scenario. Good luck.

[bichonbear1 in reply to ProgRock]

Thank you so much for taking the time to respond, especially so soon after what you have been through. My thoughts are with you.