I had a call with Compass CHC this morning regarding possible assistance in applying for NHS funding for my husband. I have to admit I was shocked when the representative told me their fixed fee for the initial application was just under £7,000 and a further £5,000+ if they have to appeal if declined.
After talking through my husbands current state she felt he was a”balanced case” which has made me sceptical if they are just looking to profit from people who are in a desperate situation or if they genuinely succeed in getting the funding.
Has anyone used Compass and at what stage was their loved ones at with the disease. My husband is cognitively aware, still eating and drinking without any problems but needs help as cannot hold utensils, barely walking, incontinent, poor eyesight and struggling with speech.
I am feeling I should try and do this myself as it’s a huge cost to lay out with a high risk of failure.
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Licquoricelover
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Hi Licquoricelover,I am quite shocked to hear about the fees.
My husband has the CHC meeting lined up end of next week, I am feeling optimistic but aware that we could still get refused.
If the process runs according to the guidelines, it should not be necessary to hire representation - at least that is what I am hoping.
My husband is still somewhat mobile and enjoys a range of activities. The big problems are
1) behaviour (huge impulsivity - he can't wait and he cannot stop once he's started doing something, however futile or reckless)
2) mobility (fall risk) - he will stand up and fall over if he gets the opportunity so must be supervised day and night
3) communication - his voice is very weak and he cannot reliably answer questions or tell us what he needs, so carers (and myself) need to interpret and anticipate his needs and wants.
4) breathing - his oxygen saturation can go low and he needs breathing exercises and sometimes extra oxygen
5) food and drink - he can feed himself (but often needs help because it takes too long) and is on "easy chew" i.e. nearly normal food, but can choke because of cramming food or getting distracted
6) cognition - he has good memory and knowledge retention, but does not interpret risk properly and doesn't understand the consequences of his actions.
The effort required to keep him (relatively) safe and happy is significant, so I am hoping for quite a lot of help (care) as well as regular respite. I'll share how we get on.
I'm trying to keep very detailed records at the moment to demonstrate the amount of interventions involved in every 24 hours.
I wish you the best of luck with the process (and I'm hoping luck favours the prepared).
Thank you for your reply. My husband seems to be at a similar stage as yours. His last couple of hospital admissions have partly been due to low oxygen saturations which I monitor when I can see he is breathing heavily. He has heart disease.
Do you have Carers currently. Who has helped you with the application?
Please let us know how it goes. I hope you are successful as it will provide a huge financial relief for you I’m sure.
Hi Bergenser. I had a CHC meeting for my husband yesterday. His condition seems very similar to that of your husband. The meeting took 3 hours. I had made copious notes under each domain and I had given each my own score. The assessor agreed with a few of my grades but downgraded others. At the end, I asked her what her recommendation is. She wouldn’t say because she said that she still had to review some of my husband’s records. Apparently, I should be notified of the decision in 28 days.
My anxiety is that, as my husband is currently in a nursing home for respite care because I was ill, she will take more notice of the home’s assessment than mine. The home is not his usual environment and he has access to nursing care 24 hours a day and care workers checking him constantly. I might be worrying unnecessarily.
Hi Liquoricelover, yes I looked up Compass after your last post and when fees were mentioned I had serious reservations, even more now when hearing of your experience. Please contact the PSP Association Helpline as they can advise on the best way forward free of charge. Successful applications are not numerous, but those that have been, have had assistance in filling up the forms from a medical professional - Parkinsons Nurse for example. All my very best wishes
Hi licquoricelover, have you been advised by any health professionals to apply for CHC for your husband? It’s useful to get their help and backing. But you can be too early in applying . I got refused the first time but accepted the second time when things got much worse for my husband. All the best.
our mum’s district nurse/matron helped us fill in the form for free - you should not have to pay! We got the go-ahead for the funding immediately (although it’s taken 10 months and lots of hoops to jump through since then, they have said they’d back date the payments to when it was approved) and it is all about how it’s worded and ticking enough boxes. Definitely try it yourself with nhs help.
Our District nurses who had been looking after my husband's various head wounds (due to falls) completed the application on our behalf and we were granted CHC funding straight away. However, I agree that the timing is crucial. We subsequently had a review and again our senior District nurse helped complete the forms and came to the meeting. You need to stress the worst case scenario.
As previously been stated PSPA can advise, so please contact them rather than any commercial operation.
That’s a staggering cost especially when you translate it back into hours of care that would cover. I would not use a legal team to apply the first time around. As others have said it is really advantageous to get a healthcare professional to support you in the process as they speak the language of the nurse assessors that fill in the DST. In our case we had our Hospice Support Nurse apply on our behalf after my husband was discharged from hospital in a bad state. She also attended the full 3 hour DST meeting. Hospice in our area is very respected by the NHS so their support applying really mattered. You have to do your homework, complete the DST yourself in your own to get a good idea of what will be discussed and prepare a lot of healthcare need examples not care examples. The more medical visits, consults, phone calls you can mention the better. A very detailed diary of last 2 or 3 months is essential so you can give dates of falls, choking episodes, district nurse visits, Gp appointments etc. When we applied my husband was housebound and receiving GP palliative care monthly visits. Unable to feed himself at all and in level 4 very soft diet, unable to walk without being transferred , had a challenging catheter which requires changing in hospital every time and had lost his speech. The assessment was done at home with my husband attending in his hospital bed and he was able to nod slightly to certain questions. It was good for the assessor to see my husband close up for 3 hours. She came back and did a further assessment too clarifying things and that took 2 hours. We waiting over 2 months to get a decision and from start of process to first money arriving was 5 months so it takes a lot of time but once agreed works well.
Phew! My social worker is arranging a CHC assessment and has said it’s tough but I didn’t realise how tough! I’m sure I’ll be asleep before it finishes; I get very tired when I have visitors
CHC should not cost anything at all. The Initial application can be done by a District Nurse or a health professional who has knowledge of your husband. It is not an easy form to fill in and it is often not successful but there is a lot of information on this site about it especially if you look at posts from Kevin_1 or just CHC. Don't please get dragged into paying. Good luck AliBee
Hi my dads matron suggested we try for CHC Funding we got an appointment and they came out to his house and asked around 16 questions then went into his bedroom to discuss then agreed that he hadn’t passed only on 1 question was he classed as serious 😠 he cannot walk has to be hoisted, struggling to eat, hearing going, voice going, think you have to have only 2 weeks to live to get it. Hope you have more luck 🍀
I’ve never heard of Compass and not even heard of CHC until recently. CHC was mentioned by my social worker, who has dealt with all arrangements. Reading between the lines, Compass appear to be in it for the money. Ask your social worker or, if one has not been assigned, perhaps speak to your district nurse. I’d definitely give compass a wide berth
My husband has CBD and immobile. He is cared for at home. When he was originally assessed for CHC he did not qualify, which was the decision we expected at that time. But the assessment showed that he did qualify for NHS Nursing Care, again what we expected. What that meant was that when he went for respite care we got some financial help with the cost of a nursing home - which was necessary as a care home could not meet his needs. Our adult care social worker worked with us during the assessment process. He is now PEG fed and totally Nil by mouth. He has since been assessed for and been awarded full CHC funding - but in addition to the CBD he has other health issues which have contributed to the result. I would suggest that if you have an adult social worker, take their advice as to whether your husband might qualify for CHC or NHS Nursing Care
I am a member of a scheme called Benenden . As part of their service the provide advice and guidance for care planning. They advised me that the first step that we needed to take was to contact our local council to ask for a care needs assessment. As a result of that we were put in touch with a range of services (physio; OT; home adaptations etc), assessed for care needs and at some point (I think when we were seeking respite care) we were allocated a named adult care social worker
Thank you. We were given a grant from our local council for a lift to be installed which was fully funded and the OT put in the application but I have not heard from her since or given anyone as a go to person for help. I will call Essex Adult Social Care and enquire.
if you can enlist NHS professionals to help with application take it,as in2018 we didnt get help with DNs or care and the process for CHCfunding was stacked against achieving any help what soever .
we are now going to apply for a period of care that was not assessed (after 2012) as advised by Beacon who also give free telephone advice .
Enlist your MP if you hit a brick wall before appealing .Good luck
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