CHC FUNDING

[Northstar1]

Hello has anyone had CHC funding removed because they see the needs are managed ?We are due for a review and there was a veiled threat last time.

It's such a worry.

Thank you x

[Kelmisty]

We had the we want to review with social services in January and have heard nothing since.

They are still paying the bills and I’ve had nothing in writing about it. So I have no idea what’s happening now.

[Northstar1 in reply to Kelmisty]

Hi are you already in receipt of the funding ?. The last review we had it took ages for the outcome x

Did they argue you were no longer eligible x

Thank you

[Kelmisty in reply to Northstar1]

Hi

Yes they pay for Mums care in her home currently. Have done since summer last year but at the review at the start of this year they started saying they wanted to review it because “she hadn’t died yet”.

I got the impression they don’t want pay it hence wanting a meeting with social services. They also did up her care visits in time at this review. So really don’t know what’s happening, but they can contact me to sort out if need be.

[Northstar1]

Looks positive they felt more care support was needed. I hope all goes well for you and your mum

[Millidog]

Hi, chc shouldn't be removed because care needs are managed -the chc guidelines say "a well managed need is still a need" and they should be taking into account its progressive = the care needs still exist and there would be serious issues if the carers weren't there to resolve - choking, feeding, prevent falls, give medication, address issues of impulsivity, deal with wounds, interpret needs more difficult with poor communication, keep safe, address risks and so much more but I'm aware some people have experienced this threat or action. I understand some have faced this when the psp person has become less mobile or bed ridden But you should be able to demonstrate things such implusivity to try and get up causing falls, unpredictable behaviours etc.For review use the words risk, danger, serious concern I would recommend you gather you're evidence in great detail- diaries, medical and health visits, appts, medication changes, incidents and accidents and near misses. Try and show that needs may have changed but have increased and are more complex such as specific deterioration, need for adjusting medication, sudden changes to handle, more fall risk, and there may be issues with choking, comms, mental state concerns etc. We have only had the initial 3 mth review so far but I approached like I did with the first assessment - I read the chc guidelines on nhs and govt sites, completed the dst document again, wrote detailed diary summaries and created a list of key issues and concerning changes and emphasised the problems we would have had without carers. I also ensure the carers record issues and activities in the daily diary The review went well so I'll be doing the same when annual review happens. If there is anything I can do please do message me and happy to chat if it will help. Millidogxx

[Northstar1 in reply to Millidog]

Hi Milldog thankyou for your reply. He is now non mobile, bed bound but other issues increase like you say. I have started to make a diary and have many health professionals involved. I will let you know 🙂 Glad your review went well xx

[Millidog in reply to Northstar1]

Hi I'm glad you have support but if you want to chat through any ideas for evidence just message me on here and we can have a call xx

[Northstar1 in reply to Millidog]

I am very grateful thankyou xx

[Licquoricelover in reply to Millidog]

At what stage did you apply for CHC funding. I am caring solely for my husband. At present he is still mobile with his frame with my assistance but I wash and feed him and manage his medications and everything else. His speech is very limitedI enquired with my GP and he got someone to call me who said she would look into it for me but heard nothing. I'm just uncertain if we would be eligible. Is it means tested. I saw Kate Garraways documentary on TV and she was refused and her appeal rejected. Her care fees were £4000 per week! It's very worrying so I keep doing everything myself

[Millidog in reply to Licquoricelover]

Hi, we applied @ 2 years after diagnosis (there had been worrying symptoms at least 2 years before - backward falls, eye problems, apathy etc but we hadn't connected the dots. At 2 yrs in my husband had gone from walking OK to stick to walker, to needing help all the time due to falling anytime. The trigger for applying was a sudden deterioration over a 3 month period when he needed supervising for everything to keep him safe at the time he was still mobile but a danger, falling daily, very impulsive behaviour especially going into the kitchen and trying to cook or get himself food, going to toilet or upstairs and falling, falling out of bed when alone, that put him at risk, slowed cognitive processing that affected everything, odd and difficult behaviour, apathy, complete withdrawal from any involvement, confusing communication, bowel and bladder issues, some choking and many zoning out episodes. We emphasised risk, danger, accidents, and the need for someone to be with him all the time, the unpredictability, the fact that one incident like a fall them affected other things like communications, withdrawal, eyes etc. I think it helped that he was still mobile, but resistant to instruction, impulsive yet apathetic so a danger and I couldn't leave the room without some thing happening. and he was 6 2 and I'm 5 1. Do read everything and learn the system and their guidelines , prepare well and do also focus on their key criteria of nature, complexity, intensity and unpredictability. It also helps if you have a health professional to help. We had a neuro nurse who knew about psp and chc so helped with and submitted the checklist and supported at the meeting but as I was the one who was caring every day it was the raft of evidence I submitted and used at the meeting that was important. BW Millidog

[Licquoricelover in reply to Millidog]

Thank you for the detailed information. I will read the CHC guidelines and intend to start keeping a diary of events. I was under the impression if you had savings this was taken into consideration or any jointly owned assets.

[Millidog in reply to Licquoricelover]

Hi CHC is NHS funded care. It's not means tested and it is awarded if you can prove a primary health care need. Its hard to get and is assessed against @ 12 different criteria and 4 key areas of complexity nature, unpredictability and intensity. There is an initial checklist assessment process and if successful at this stage you progress to a DST = a full assessment conducted by an NHS assessor and a social worker assessor. Key is that you demonstrate needs are greater than the social care legal limit - this is where the hard work is using evidence to show care needs are complex deteriorating etc. If successful they should fully fund the care needed whether that be at home or in nursing care although I do appreciate there is somewhat of a postcode lottery and it appears rules can be twisted hence the need to do your homework. The one thing I would recommend is not to talk about personal care but rather keeping your person safe from falls impulsive behaviour etcThe care you mention is social care. For this you have a care assessment where they determine care needs and if the psp person has more than 23250 in assets and savings they fund their own care. Your savings and ownership of house is not taken into account and they can't make you move if your loved one went into care. But they can put a charge on loved ones half if house to regain monies once you pass away etc. If you're above this threshold and you believe you are at a stage where needs are complex I would advise nor going down the social services route. Just my thoughts Best wishes

[Millidog in reply to Licquoricelover]

Sorry forgot to add its not means tested. It's a good idea to Google chc and read everything you can about the process, the checklist criteria and the DST.Alos look up Beacon and Care to be Different both have very useful chc info. I'm sorry to say applying for chc is hard hard work and it's easy to leave it to others to sort but you are the one who holds all the valuable info and evidence so the more you know and can demonstrate need is good and with be far more than a health professional who may see your psp person infrequently. It is like your most complex ever job application and most testing interview but the more you know and prepare the better chance you have of succeeding x

[Cinephile in reply to Millidog]

Fully endorse everything you write - I’ve just been through the CHC funding process, successfully - so far -, with my husband in February and am hoping that the care package/funding for my husband, with 4 weeks respite for me per year, will be finalised very soon. My experience is that the administrative process (pre and post assessment) is a minefield so all you can do within your power to prepare and keep on top of information management, constantly checking, questioning and, if need be, correcting inaccuracies in what third parties write in their notes/letters/plans and reports about your loved one’s health condition. Make sure all information is relevant and fulfils as best as you can the requirements across the 12 domains of the CHC DST - do not leave anything out - even if you don’t think it is important. Bear in mind the weighting of the 12 domains and that you need to score as highly as you can across as many of them as is possible - especially those that are weighted as priority, severe or high need and demonstrate a range of healthcare need across all the domains.

I was given a very good piece of advice prior to the meeting: “there is a knack to the process and you need to get it right first time” (so no pressure there, then)!

I won’t lie - the process is gruelling, time consuming and nerve wracking - and, as is alluded to in many posts - on-going - as you need to maintain eligibility - it’s not a one-off process. You need regular attention to your own and others’ record keeping - which is an additional burden when caring at home for my husband but it’s become a habit now.

There were positives: I was buoyed up by the support I received from professionals who came out for us prior to the MDT and on the day. We had 12 people at the meeting - in person and via internet link - including my husband’s main carer and my neighbour who took notes for me, and the opportunity to participate for the first time in a very full and comprehensive MDT meeting bringing all the professionals together in one room which has substantially improved communication between professionals to support my husband’s care ever since the MDT meeting. The nurse assessor was very thorough and supportive during the MDT meeting. I requested to speak with her prior to the meeting to discuss procedural matters and that really helped - we checked what information she had and I was able to fill in any gaps - she was very amenable to this - written evidence, presented prior to the meeting and during it, is vital to the process - and my typed up healthcare diary was a key piece of evidence. I managed to organise for the key health professionals who knew my husband really well to be present at the meeting (I had to do this myself and keep them fully informed to ensure their invaluable presence at the meeting) and organised comprehensive support letters from key consultants (neurologist and hospice consultant doctor, consultant neurologist nurse, hospice social worker). Of course, most of this was within my control (though the admin side of the process is very challenging to navigate) as I care for my husband at home - but good working relationships and communication with professionals is vital whatever the care setting. Preparation and planning is vital.

Sorry for the long post - I feel passionately that people living with PSP/CBD and their loved ones get access to the best possible care and support. Best wishes to all

[Northstar1 in reply to Licquoricelover]

Hello we applied in 2021 when my husband became psychotic, aggressive he had been in a care home then nursing home. We have a Community Matron ask you GP for a referral she is a huge support. The last thing you want if for you to become ill, it's very difficult to be sole carer. Do you have any support so you can go out xx.

[Licquoricelover in reply to Northstar1]

I don’t have much support but my stepdaughter tries to help out when she can. I am able to leave my husband for a couple of hours so. I can go to my Pilates class. He is quite content watching a film whilst I’m gone at the moment although I’m aware this may change. Thank you for the advice.

[Cinephile in reply to Millidog]

Found your reply really helpful regarding first CHC funding review and detailed record keeping - there is no let up is there and a proactive approach is the only way! Best wishes

[captainsdaughter]

the initial CHC funding my dad got was under a fast track scheme which is for if you’ve only got 6mths life expectancy- except no one told me that! So when I also was notified of a review about 9mths later, the initial comment I also got was ‘because he hadn’t died yet’! When I finally got to speak to someone who could explain it properly, they said a review should’ve been done after 3mths as the fast track is emergency funding, but because of ‘backlogs’ they were behind with their reviews! It’s very stressful. The review involved someone visiting my dad in his nursing home, I was present too, I was given the option to also complete the risk assessment tool which I did (it’s a long document but worth doing as they have to take these views into consideration for at the actual review), and then a 2hr meeting on line which I attended as well as one of my dad’s carers. The outcome was positive and CHC funding was continued to be granted. We’ll be due for an annual review later this year. One thing to ensure is highlighted is the unpredictability of the disease- this scores highly on the risk assessment. Sometimes my dad needs one carer for transfers, sometimes 2, sometimes he can choke, other times he’s ok etc. this means planning his care needs is difficult. Other thing to note is I was told by all involved in the CHC review, is that the process is not appropriate for neurological diseases! I was lucky that my dad’s assessors had experience of PSP. Sorry for the long post, hope it helps and good luck.

[Blacklabmum]

Hi, I’m sorry to say this to you but my husband who has CBD had his CHC funding withdrawn after a year back in October despite him still being non mobile, non verbal needing all care, having seizures and choking fits, he is classed as end stage, we are going into our 6th year. but he’s met many deadlines set for his death and yes it did feel like it was withdrawn because he hadn’t died.

I have only just had a reply to my complaint this took 4 months, in this time I have been caring for him on my own, this is what I have now chosen to do as the mental stress caused by the system is harder than caring for him. Sadly it has left me with no trust or faith in anyone in the health care system , things got worse when adult social care decided to come in, be wary of them. Previous assessments have been carried out by the District Nurses, this last one was a mix of a nurse from an agency that is employed to do CHC reviews and a social worker who we had never met.

Have all of your information up to date, try to ensure that they have all the information from your doctor that is legally required , you can find the CHC checklist on line. Most of the information for my husband was lacking , the GP they used to verify things had never seen him but as she was his named GP they went to her, make sure the GP that knows your loved one best is down as their named GP. Have someone else with you and I would recommend recording everything if they will let you as it’s amazing how memories of events change from person to person as I have been finding out.

You are going to be obviously nervous but make sure you are well prepared and if you don’t feel well prepared ask to postpone the meeting. I wasn’t as my paperwork apparently got lost in the post and I now know I should have been more proactive.

I hope this helps and good luck you can do it

[Licquoricelover in reply to Blacklabmum]

Thank you. Very useful information. I wish you continued luck and good health. It is hard doing it all by yourself but the temporary carers we had when my husband came out of hospital last year caused me too much stress and some were just happy to stand and watch me do everything whilst they chatted! I’m very wary of having carers and to be honest I don’t have the time to keep meeting different companies at present.

[Blacklabmum in reply to Licquoricelover]

It is hard to find good carers nowadays who you trust, people also don’t appreciate how intrusive it is. All we want is a normal life as possible, doing the caring myself has given us a bit of this, for example on Easter Sunday we sat in hubbies bed and ate hot cross buns and chocolate until 11am, we couldn’t do this with carers coming in. I will say though you must know your limitations. It is also important to have all of the equipment you need and be fully knowledgeable and competent to use. It You must feel safe for both of you. I wish you luck and warm wishes for your journey xx

[Licquoricelover in reply to Blacklabmum]

I agree. It can be hard at times but as long as we get rest and sleep well I can cope fine at present. Fortunately my husband is still able to walk with his frame indoors but i am fully aware this could change at any time. This disease is so unpredictable

Take care.

[Blacklabmum in reply to Licquoricelover]

It is hard when they stop walking but as long as you have a stand aid and a wheelchair you can still transfer. I asked for an electronic stand aid which gently lifts him up and encourages him to stand as he can no longer pull himself up with a manual one. I use an Oxford journey stand aid which is brilliant, however when he is tired I hoist him with a gantry hoist, we have one in the lounge and one in the bedroom. It is just so hard having to adapt with each decline and don’t forget some people find some lovely carers you may be lucky xx

[Licquoricelover in reply to Blacklabmum]

Did you pay for these yourself or were they provided by the OT team. Thank you this is really helpful as I have no idea what is the best equipment for me to get going forward. My husband is 6ft tall and 18st 7lbs

I am 5’8 and 10st 7lbs. but have lower back problems so I have to be very careful.

[Blacklabmum in reply to Licquoricelover]

Everything was provided by OTs or phsyio and it’s better this way as the equipment is serviced regularly and if there is a problem fixed or replaced, in the Wiltshire area by Mediquip, they also give you an emergency no. For out of hours problems. It is easier if you have a hospital bed as you can raise and lower it but it was hard moving out of our bed. The size difference will be a problem and the physio had concerns about me doing it as my husband is 6ft 2 and 18stone and I am 5ft 3 and around the same as you. I’m lucky I have no health issues. Having said that I’ve been doing it for nearly 5 months with no problems so far, Just be careful and remember if you hurt yourself then your husband will have to be cared for. I also asked around family and friends about help if I had problems, surprisingly friends were more willing and I have had to call on a couple at times. It’s not easy just be aware of that. Hope this helpsXx

[Licquoricelover in reply to Blacklabmum]

Yes I know Medequip as they delivered a shower chair and commode for my husband

I was aware of a Sarah Steady but the Oxford stand aid looks good . Thank you

[Northstar1]

Hi how long did he have CHC for please. Xx

[Blacklabmum]

We had CHC FOR just over a year then the hospice decided to ask for a review as they felt he no longer met their criteria for care, I don’t know if they intended him to lose his funding totally but that’s what happened. I have complained but no apology or apparent appreciation of how betrayed it made us feel. Good luck with your journey xx

[Bergenser in reply to Blacklabmum]

Wow, that is really unacceptable 😡. So sorry to hear you went through that .

We're at early stages yet, going through the initial checklist for CHC next week. I have worried that some of the needs that makes thing unmanageable now, might be seen as "resolved" when the illness progresses further. I wish you the best in this terrible situation 🌻🫂

[Blacklabmum in reply to Bergenser]

Thank you Bergenser, I wish you best wishes too and don’t forget if it goes badly you can appeal xx

[Robbo1]

Whatever you do, do not indicate that you are coping.I applied for this and had sheets of notes indicating all that I did for my husband.

I thought it would show a need for help, but instead they told me, that as I was fulfilling those needs, he didn't need support.

I told them that if I had applied for a nursing or caring job, they would laugh me out of the room, because I was in my 70 's, had had cancer twice and had arthritis in my spine and spondylitis in my neck.

It made not the slightest bit of difference.

We finally got a bit of help when my husband went into a nursing home for a short stay and was assessed there .

Nursing someone you love is difficult enough, but having constant battles to get the right support is absolutely exhausting and draining.

My very best wishes. Good luck with your review . R.

[Northstar1 in reply to Robbo1]

Hi Robbo 1 it's an awful system to navigate when you are in the worst place in your life xxx

[Blitzford72]

Hi Northstar 1My mum has had one 2wks ago!!!

Unfortunately nearly all the questions were NOT

Directed for someone who has a rare neurological disease all very generic and could apply to just about everybody ,except PSP !!

We Sat for 3 hours and only 2 questions actually related to my mum .

So the funding has now been withdrawn and back with the county council ,thankfully she can stay in the residential home for the time being .

I'm sorry ,I really hope you have better luck than us ,just prepare yourself

Ps

My mum choose not to sit in on it and that was a good thing .

[Northstar1 in reply to Blitzford72]

Hi I am so sorry about this it's just so unfair. Will you have a social care assessment now ?. How long did you have CHC funding for x

[SunriseLegend]

This discussion is so helpful - we don't yet have CHC funding - first application just awarded nursing care for respite which was useful - but it will be reviewed soon because of changes to my husband's condition so it's good to hear about others' experiences

[Blitzford72]

Hi NorthstarI'm afraid this has happened to my mum ,the trouble is all the questions apart from a few is NOT applicable to psp suffers.

It's about time no more generic questions !!!

I do hope you get yours

Xx

[Northstar1 in reply to Blitzford72]

We did but reduced hours as they assessed a needs change xx Horrible process.