I have managed ti finally get an assessment booked for my dad for CHC funding. I know from reading your posts that this is going to be a super challenge so I am keen to get advice, tips and how I can best be prepared for the assessment. I am UK based and the assessment is going to take place via Teams and based on ‘evidence’ that I have been told to gather.
We were receiving adult social care but we had to let the agency go as they could not meet my dads needs and barely did anything. We have a care plan in place but currently my mum and I are doing everything. I am going to not be able to help as much after Summer hols due to young children and family.
I want to do my very best and could do with your guidance and advice as I prepare for the assessment.
We have Palliative care involved as well so not sure if I should tap into this group.
Thank you all in advance
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Khalissi
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Hi Khalissi I am not in UK I’m in Australia but I would say definitely get input from the palliative care as most of the time there is no respect or understanding for this awful disease PSP or CBD because it is so rare give it your best shot and get everything and everyone on board
I ended up caring for my husband most of the time it was physically and emotionally draining get all the help you can and if possible try get some respect for the disease
I printed out pages of stuff when he was cared for in a nursing home( not for long though) it never got read I had to go all the time and do the necessary things for him he got treated like he had dementia good luck with everything hope it goes well x
Thank you so much for responding. Sounds similar with my mum too who is doing everything. I have started putting a document together so I myself can gather thoughts, evidence and professionals input. I know this is going to be tough but as long as I give it my best shot for my dad (and my mum who is drowning) Thank you again x
You’re so welcome just go with your gut don’t worry about upsetting anyone professionally or not because they don’t have to deal with it day in and day out like your family take care x
Hello. Make sure you do your research into the process. There is a helpful PSPA guide for healthcare professionals available online which goes through CHC and how PSP aligns. Also do your own scoring of the checklist using your experience and evidence and use this in the meeting. If you then get through to the MDT second stage even more prep and I sent a statement in about the impact of PSP on my mum and also spoke to the social worker in advance and sent her and the CHC assessor the PSP healthcare professional guide which they both said was helpful.
Thank you so much for responding, really useful. Would you mind sharing how you rated the checklist and/or statement please (only if comfortable)? I think it would help/guide me. Did you end up successfully getting CHC?
I’ll need to look it up to remind me of the scoring but it’s based on worse days and without care as her care is currently being managed. So I looked at her risks - risks of falls, dehydration:malnutrition, harm it was a long list from her care plan but in the care plan it’s spread out and not in one place. I had a log of every fall and treatment. Eg paramedic or hospital admission. Also that you say social care didn’t meet her needs - do you have any records or anything in writing to support this. I had her consultant letters so from her older person consultant, her community neurologist, SALT. Have a full list of healthcare professionals invovled in her care. List of specialist equipment needed and provided. Our meetings were face to face and I attended as Mum doesn’t have capacity. Yes we were awarded CHC and she has four primary health needs.
My advice, if you can ask your local hospice if they can provide support to your Dad, this really helps me to support Mum. They supported the CHC funding and helped us.
I was advised you have to base the support needed on the worst days, as the condition can vary hour by hour, try not to say you can do everything and the CHC is awarded based on medical care not social care so focus on the things such as coughing swallowing, balance, communication things that couldn’t be supported by a general care agency.
If the medical teams around him support the cause I would hope it will be a positive outcome. And yes definitely speak to the palliative care team if they are involved - the assessment team will probably speak to them.
Who is attending the meeting ?. Get as many professionals involved to attend. We had social worker, community matron, psychiatric nurse. Call. Beacon they can give advice too.
Thank you, that is the aim to have everyone who has been involved present. Availability looks to be a challenge as it’s in 2 weeks and only was informed yesterday but CHC assessor did mention that he will reach out to everyone that I provide details of.
Lots of great advice from others. We’ve just been awarded funding despite the assessor and care home nurse saying she wasn’t eligible! As others have said focus on the clinical issue. I suggest you really push how much you have to anticipate medical needs such as checking positioning if he can’t adjust his position, adjusting his diet as his ability to swallow changes from day to day, what you need to do to cope with the alternating blocked nose that affects his breathing or the runny nose that trickles down his throat and makes him cough, if there’s any medication that is given as needed really stress how you have to judge when it’s needed etc. The other main thing is that everything needs to be evidenced so you can’t just say something in the meeting without having something to prove it so pull together all the letters and reports from any professional at all - we got sent back to the beginning the first time because the care home had not got input from enough different disciplines (despite me hassling them for months about putting referrals in place). That includes you keeping records of everything for one week: maximise and record every application of skin cream, every clean up from hygiene accidents, every bump and fall, every time you adjust his position including at night etc. Then write all of this in the form you are given - expect this to take quite a few hours! And work out your own score based on the criteria and argue your case if they disagree in the meeting.
The book from Beacon was quite useful. I hadn’t realised that PSPA provided a pack so that’s worth getting too.
Thank you soo much for sharing m, such useful tips and advice. This process is overwhelming and I want to ensure I have done my utmost best. Thank you again and fingers crossed for my dad. X
I made sure that everyone involved in my husband’s care supplied their views on dealing with him, the level of need and the communication difficulties. Also keep a note of every incident, feeding, medication, swallowing, eyesight, dexterity, falls/prevented falls, continence issues, catheter incidents, infections and skin care, absolutely everything that is involved in keeping him safe at all times day and night. Even some specialist reports that I had received I submitted as only one had been produced by the team. My husband was very deaf and the hearing specialist added useful information about his hearing loss and how she managed to complete a test. It wasn’t until I noted down every incident (or avoided incident) that I realised just how much was involved every day. My daughter was present with me for the assessment and she made detailed notes in case we needed to follow up later. We succeeded in getting the funding and I was so pleased that I had pulled in and submitted all the information in readiness. Very best wishes.
Sadly my husband passed away after just over a month of funding but he is now at peace.
Thank you soooo much for sharing and I am sorry to hear about your husband, this disease is one of the worst and as I type this in years trying to remember my dad as he was before all this! Fingers crossed I really want to do this for him and my mum.
Hi Khalissi,My husband has just been awarded CHC funding last week and I'm still in shock and awaiting the chc care coordinator to contact to discuss and plan care needs. We currently have 2 x3 hr care Co outreach worker visits and a 1 day day centre that I've been paying for but I do all the rest. On being told my husband qualifies they have immediately started paying for this until a further care plan is arranged.
I submitted the checklist with the help of our Specialist Nurse and as this was successful we were allocated a meeting date within 28 days. Although it was only confirmed 4 days before meaning there wasn't time to send evidence in but I was requested to take it to the meeting. It was conducted by an NHS nurse assessor and a chc trained social worker. The only others they invited were the specialist nurse and OT but they did write and ask for info from gp, care Co to add to their evidence.
In preparation and for a while now I read everything I could on this site by searching chc posts, I read everything on the Beacon and the Care to be Different website. I looked at the local healthcare website which gave details on how they run CHC assessments
I prepared evidence in the form of the Family form in great detail with incident and accident examples with dates, they had requested this form in addition to a 72 hr diary. I said a 72 hr diary wasn't reflective of how psp affects my husband so I prepared a diary of events and incidents focused on the last 3 mths showing deterioration with some additional info giving a snap shot of progress over 2 yrs, 12 mths, 6 mths and completed a document evidencing how my husband met criteria of Nature, Intensity, Complexity, Unpredictability as they will focus on this. I took copies of each of these documents and copies of the PSPA CHC document from their website and handed to all present at the assessment.
I also:
- completed the DST with key points I wanted to raise and my scoring for each domain (same points covered on the family form ) I had noted some key examples, dates, how this impacted and how it affected other domains eg how cognition affected falls, how falls affect continence etc I used this to run through and answer questions and to give my score for each.
- took the daily diary I had been keeping. This was usual during the meeting as I could refer to it and giving quick examples seemed to help get points across.
I also took the advice of Kevin 1 from this site and read up on the process to get good understanding of what they could and couldn't do and say and how the meeting should run
The meeting was 3hrs long and focused on asking me about the care I give as main carer. We went through each of the 12 domains in turn. The assessor noted my responses and also asked the OT and nurse. At the end of 3 hrs assessor said she and sw would meet to determine scoring and if eligible and didn't involve other attendees in this! It was a hard 3 hrs and assessor was quite distant, sw said nothing.
They did query me hard on why I hadn't got more care so I explained difficulty in getting care in this area, priority was keeping safe so focused care on someone here for longer periods and fact that changes were recent so currently trying to adapt quickly
The one thing I didn't do was focus on personal care-which I think helped I focused more on falls, risks, cognition, behaviour, mental state, how I had to be there all time to give medication, ensure food and drink, stop ir care after falls etc. Emphasise health needs all the time.
I was contacted 3 days later to be told the assessor was recommending for chc, although she had downgraded all but 2 of my scores and got a letter confirming a couple of days later.
We had needs in all domains and were scored 2 high mobility and cognition , 1 low breathing and all the rest moderate. And they emphasised Nature and Unpredictability affected all areas and recognised there were issues of complexity and intensity. I think the fact that my husband is still mobile but has very frequent falls helped in its own right and is affected by and affects the other domains.
Thank you so much for sharing, this is super useful to me! So glad I’ve reached out to this amazing group otherwise I would not be so prepared as I am planning to be now. Thank you
Ibeieve others have suggested getting reports from any professionals involved with your fathers care eg therapists dietician etc. Also if your father has any other health issues list those and what help he needs to manage them eg inhalers for respiratory problems, medication for arthritis and heart problems etc.
I was fortunate in that the process went smoothly. A social worker and specialist nurse came home to do the assessment. Although I answered their questions I had my husband along side me so they could see how little he could participate in the process.
At the end of each area they recapped to make sure they had got my answers down correctly and there was nothing more I wanted to add.
Hearing of other people’s experience I realise how fortunate I was to have such a good and fair assessment.
As a result I got a carer twice a day and as he deteriorated that was upped to three times a day. Eventually we had a night carer too when he was peg fed overnight.
Inspite of all that help it took me about twenty months after he died to recover my energy.
I would agree with everything that you have been told on this site, my wife has CBS and we achieved CHC funding on the second assessment last January, you really do have to concentrate on health issues and not care. On the second time, we achieved severe on two domains Cognition and Drug Therapies which impacted on the nature, intensity, complexity, and unpredictability.
As you can see it is a very difficult process to understand. The MDT agreed that there were interrelationships between the domains of Cognition, Psychological and Emotional, Mobility, Continence and Drug therapies.
It is all about the 4 key indicators as part of the CHC process and their interactions.
I would also say that if you have palliative care in place I think it is normally fast tracked but get as many advocates as possible to support you on the day.
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