Simply wonderful information as usual Kevin! Thank you!!!!! X
Thanks Kevin. My Mum passed the Checklist so I am now looking at the DST paperwork as we await the next steps. I am starting to realise how involved this is going to be. Its hard enough to try and cope with the stresses and strains of PSP/CBD let alone have to deal with this as well. I really appreciate you posting this as its come at just the right time for me. Contacting Beacon was on my to do list so thanks again Kevin and hope you are having a better time?
At this stage the main task is to make notes over time of all of the care you do and of your cared ones needs. Its so easy to overlook things if trying to do it in one session. These explanatory boxes in the DST don't cover it all and you may find you have to do a separate social needs assessment too. (That is different from a Social Care Assessment. The Social needs assessment is part of the multidisciplinary approach. If you get one of those its important to ask them to assess whether or not the care is within the legal limit of the sicial services. If it is not they are not legally allowed to provide anything and the CCG has to provide it all. A great advantage as that means no means test.
Remember you get one hour free from Beacon. You might want to save it up until you hit troubled waters. That is there inferred advice in the toolkit.
Thanks Kevin the plot thickens...so there is a Social Care assessment and a different Social Needs Assessment Yay!! Hurrah even more to find out about! This is clear as mud and so is the difference? Can I just clarify that the Social Care assessment is from social services and the Social Need assessment is from NHS CHC?
As part of a CHC assessment there is a social need assessment carried out by Social Services. It is specifically for the Social Services input into the Continuing Health Care Assessment which is required to be multidisciplinary and this involves Social Services input. As part of that assessment the Social Services should give an opinion as to the 'Legal limit' of social services possible care in that case. If the care is too clinical then the Social Services is not legally allowed to offer care at all - not even in partnership with the NHS.
The Social Services are required to offer 'Social Care' for those non clinical cases of need.
Enter the Social Care Assessment (of need) which is the pathway to Social Services "Social Care". Which unlike the NHS is means tested.
So if the Social Services declare (in either sort of assessment" that the care required is beyond the Social services 'legal limit' then the CCG (NHS) is obliged to pick up the care.
You need to get the Social services assessor to be very clear with you.
Is this a social needs assessment in preparation for a Continuing Health Care panel?
If you have an application in for CHC then the Social Services should not assess for social care. Refuse such an assessment until the CHC assessment is done. This is as per the National Framework and the law.
Or
Is it a Social (needs) Care assessment for Socioal Services 'Social Care pathway'.
I had to draw teeth to get a clear answer form the social worker, who visits tomorrow and who eventually said it was part of a CHC review.
Why the secrecy? - Nope just a young worker who was a little confused with the terms!
I think the legal limit is Section 21 of the National Assistance Act - I could look it up for you if you want.
Whichever, stress that you require them to assess the legal limit. If it is outwith their legal limit and it is a Social Care Assessment they should refer on to the CCG for CHC.
Also don't hold back... Tell them about the pressures your under and if you struggle emotionally or physically - lay it on.
Also do not minimise the care needed... lay it on the line!
Make notes of all of his needs and your struggles and give them a copy... ~They will be pleased - it helps them.
Don't forget things like monitoring the development of the condition and monitoring bowel movements and monitoring the effects of medication... All clinical things adding to your case for CHC.
Those article under the link above explain all of this.
I'm afraid it is a struggle, but if you are clear and upfront they will be grateful.
Goodness me, I've read this 3 times , still unraveling my mind !!! Ha ha, how the heck we are supposed to sort through this minefield I do not know. Fortunately my husband seemed to sail through the CHC process easily , care in home has just started. But I am ever conscious it will be reviewed soon and annually , so it's good to read your "rants" and keep abreast of things . Motto "be prepared" springs to mind. I note you get respite 3 times a week at present, how is that done , can I ask??? I get 3 hours sitting a week, it isn't enough , I have to tear round doing basic stuff, I've no "me " time to relax and meet up for a chat with anyone. I'm really bogged down with it all. Good luck with everything. Thanks for the Beacon link, very helpful . G W.
Like you our journey although stressful was fairly smooth, my difficulty was as I was doing all the nursing I had to prove I was using my nursing qualifications to assess.
Sorry I digress, when the care package is discussed be very very vocal, my argument was that psp does not lend itself to routine! Tell them what you want, I have three hours in a daily block, and six hours on a Thursday weekends are free, any arguments tell them you are still a cheap option!
Thank you so much for replying in such detail I really appreciate it. Sorry it has taken a few days to get back to you but I work and have children too so I can't always reply as soon as I would like to.
I have been advised by our specialist nurse to contact Social Services for an assessment and she is also putting through the referral to them. We have not had any input from Social Services at all as my Dad, me and my sister have managed with my Mum but it is really taking its toll on us.
I think my Mum, as she has certainly passed the Checklist for the next stage, is already beyond the legal limit for Social Services care but could I ask if you know Kevin how I find out what the legal limit is? is there another form for the Social Services Assessment?
We are cleaning and applying dressings to my Mum personally on a daily basis and as she is currently moderate or severe on 7 out of the 11 on the checklist I think we are in this no mans land of between Social Services Care and NHS care awaiting the next stage. I am feeling rather lost at sea with my Dad refusing to allow additional help (they have been married for nearly 60 years) and me and my Sister trying our best to cope but only just managing with our families and work too. Meanwhile CBD continues daily and relentlessly...
We cannot possibly wait months and months for NHS help so do you know if we should ask Social Services if they can provide some clinical help while we wait until a decision is made about CHC funding or if they can't provide that clinical help what do we do? Carry on with the daily toil of toileting, wound dressing etc ourselves? I am quite worried about managing her wound dressings. I have got the district nurse phone number today to ask for home visits so I will be doing that as from now.
I never thought I would be writing this on a support forum but here I am and also hoping that in posting this it might support others in the same position.
I think you are also in a difficult position Kevin. How are you doing? You can always pm me? I am thinking of you.
I strongly recommend that you do not go to the Social Services. If they have already declared you beyond the legal limit they are legally not allowed to provide a service - and to be honest they may be slow too.
You have passed the check list - and even if you have not: Telephone the CCG and ask for an urgent assessment for "Fast Track Continuing Health Care". They can often do it the same or next day - It is what is says - Fast Track. Spell the urgency out to them, do tell them there is too much nursing need and you do not have the skill to do that. Do not let them push you back onto District Nursing... Tell them you cannot cope with the care and that he is at risk - stress that.
If you do not get a super fast response got to the GP and ask them to refer urgently.
The purpose of fast track is to stabilise urgent situations quickly - the full DST assessment follows on later.
Social Services will be a slower route.
One of the problems is that so many staff in the community just aren't aware of how the system works and their advice can be poor - I know - I worked in Community NHS for many years as a practitioner and was just not aware of CHC. My excuse is that I was in Mental Health (can I get away with that?)
Come back to me with any issues at all... there are more ways to skin this cat.
Best of luck and I wish you the energy and strength at this terrible time.
However the route I am suggesting will be fastest and get you onto the inside track for full (non means tested) CHC.
Adding - Do not be surprised if the GP has not heard of Fast Track - Just tell them it is for fast responses in urgent situations - ask them to do a telephone referral and hav e the CCG telephone number to hand to give to them - We had a superb GP and she knew little of these fog bound machinations.
Hi Kevin this is really interesting. I am actually meeting s lady from the council today about mums finances and paying for her to stay at the nursing home for good. I am concerned as I don't really know what is going to happen as I assume mum now loses her housing benefits etc mum was tested 8 months ago and said she was not eligible for CHC so I will need to check if she is now as she has somewhat deteriorated hence her now being in full time care.
Mum is going into a Nursing Home. That's a tough call for you all.
Absolutely you should re-apply for a CHC assessment.
Also ask the Social Services to assess whether he is still withing their Legal Limit of social care provision under the National Assistance Act. Don't be surprised if you get a blank look at first a lot of staff don't know there is a legal limit. The managers do. Essentially if there is too big a Nursing or clinical need then the Soc Serv. are legally not allowed to provide the service, but must hand it on to the NHS (CCG) who then become pretty liable to fund.
I would ask for a legal limit test and re-apply for another assessment from the CCG. The CCG cannot refuse BTW.
Good luck.
PS
Do not listen to comments from Nursing Homes like, "Oh, she won't get it." They seldom know how the system works and you won't know until the assessment is done.
Do not listen to comments from Nursing Homes like, "Oh, she won't get it." They seldom know how the system works and you won't know until the assessment is done.
I saw a nurse from the CHC yesterday and now have been given a date to appeal.She was very helpful.Also spoke to Beacon and of course PSPA.I hope I made my points. She was of the opinion the case was presented quite badly and even contradicted itself and after leaving the DN in April did not arrive from the social worker til June.I suspect a qualified district nurse even finds all the paperwork confusing to start with hence the contradictions. Sadly if Des was still with me I could not have found the time to get stuff together and drive to Yeovil,it was 100miles round trip.
Good of you to help people on this forum,if I get a good result PSPA will benefit WE MUST FIND A CURE. Px
Its always best to have a copy of the DST form in front of you too when they are doing the assessment. It tells you how to score each section on a scenario basis.
Better still is to download one from the government website and to complete it before they arrive. There are boxes to put descriptions of each set of symptoms. That way nothing gets missed.
So sorry you missed it the first time around. Good luck.
Thank you so much for sharing Kevin. I have just started to explore carers, respite etc. Up until now it has just been me and as a nurse I prob just get on with it but we all have limits.
Really appreciate the guidance you have shared thank you.
Good advice, and can I just add that there is also an excellent website called Care to be Different which is all about CHC and it is very informative - but also can be a LOT of reading !
Hi all, my mum was awarded chc last May, this has now been taken away as she was assessed as not needing 24 hour care! This is a lady that lives in a nursing home, he cannot weight bare, feed herself, is doubly incontinent, swallow is failing, Cant cough, can barely speak, need I say more. Social care have assessed her to need a high nursing care need and cannot understand why they have taken her funding away. I have appealed this decision and have a meeting next week. I have also written to our local MP and the prime minister! To say I'm cross is an understatement, I will fight this all the way to the papers if I have to! Mum can do nothing by herself, her food is puréed and drinks thickened, she also has vascular dementia and ckd stage 5. My dad passed away last August from prostate cancer, they had been married for 58 years. I made a promise to dad that I would look after mum and make sure she got the care she is entitled to. When I spoke to mums dr, he had not been contacted for his views by the chc team! My mum continues to decline and in my heart I know she wants to be with dad, but I will continue to fight, not just for mum but for all the other families with loved ones with psp who have to fight for everything because so little is known about the disease.
If you are going to use them phone quickly - they give you a telephone appointment a few days after.
You may also want to ask Social Services to rule whether or not your Mums care is within their legal limit. Essentially there is a legal limit of complexity beyond which the Social Services cannot legally provide care. This is the boundary between the care they provide and that of the NHS. The dividing line. If they judge the care to be beyond their limit then it necessarily falls to the CHC. This is a standard decision for them to make in these cases and they should put it in writing to you as well as inform the CCG (that is what the regulations require them to do). Be warned not all front line staff are aware of this. I found I needed to prompt them to discuss it with their manager.
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Who qualifies for continuing health care (CHC). 
Continuing Care Brickwall
NHS Contuing Health Care
