Any NHS people who could answer some questions about 'continuing healthcare?'

[carocaro]

My Step Dad has MS plus several other health issues, with carers twice a day at a cost of £800 a month, my Mum cares for him the rest of the time. He only has the partial use of his left arm. They have applied for continuing healthcare weeks ago and have heard nothing. Who can they chase about it? My Mum has come to the end of being able to care for him, as she has health issues and cannot, at aged 64, provide 24 hours a day care for him. Something has to change ASAP eg: him to go into a home, but they can't afford the £800 a week this would cost.

Did they do the full application or just the tool to see if an application was worthwhile ?
Who filled out the paperwork ?

I think it was a full application with the GP, district nurse and social worker.

They need to speak to whoever took the lead on filling in the application. This is generally a health professional who is taking the lead in his care. For example the Community Nurse or MS Nurse.
Initially there should have been a checklist filled in to determine whether he is eligible to go ahead with the full application. He and your Mum should have been involved in this.
If he fullfils the criteria then he the full application can go ahead. This is very lengthy!! and involves all professional involved submitting reports and meeting to agree where he fits re the 'domains' of care need.
Be aware that you really do have to have very high levels of need, involving specialist care in order to qualify and there has to be evidence to this effect.
For example being incontinent is not classed as high need if it can be easily managed with pads, you would need to have a high degree of bowel management or catheterisation to meet the level of need for funding.
IF someone needs fulltime care it does not automatically follow that CHC will pay if these needs are easily met in a residential or nursing home.
It is worth googling the CHC paperwork to see where he fits.
Hope this helps

ah, cross post. I would check if the application has actually been submitted, then ask someone to check with the local CHC Team when it is expected to go to panel for a decision.
From experience the pre-checks on forms are very picky!! and they can be sent back for further info or queries.

Just re-read your post. If he doesn't get CHC funding and he needs full time care then he should be assessed by Adult Services re his care needs and if they agree he needs full time care then he should have a financial assessment to determine what he has to pay towards this and what Adult Services would pay. They will have a limit on what they will pay but if he is self funding then this will not apply. However if he opts for a self funded expensive home then Adult Services will not pay over their rates if he goes to them for help when he falls into their eligibility, ie savings, assets below approx £22,500 (I think)
They would take into account his pension, any benefits, savings in his name.
A property would not be counted if his wife is still living there. But you would need to speak to teh social worker re all the ins and outs of this.

Hi
we have been having a similar problem with a family member.
The person concerned had a debilitating stroke aged 65. They were in hospital for 3 months then a rehab unit for 5 months. Upshot is they can no longer walk,have severe brain impairment, doubly incontinent. Have no use of left arm, shoulder, leg hip, and are blind and deaf in left eye and ear.
we found a suitable nursing/care home, as the family members husband is too ill himself (cancer) to look after his wife. We applied for full funding, but were turned down. The home costs over 1K a week, so 4.5K a month. This money has to be paid for out of life savings. (which are not huge) We have been told when the savings go down to 16K the state will pay the care bill, but when our family member's husband dies all care costs will come out of the sale of their family home.
You pay a life's worth of taxes to be told when you really are ill and unable to look after yourself, the NHS don't want to know, the government don't want to know, the local authorities don't want to know...basically you are on your own.
OP I wish you luck with this minefield!

He has primary progressive MS, onlu partial use of his left hand which the strength has usually gone but lunchtime. He has a Stoma, which is only partially working and may have to be done again if the daily visits from the Stoma nurse to try and open it up don't work. It bursts or blocks and my Mum had to change it and clear it all up several times a day. Nurses and carers are not allowed to change the bed on their own, two of them have to do it, but it is OK for my Mum to do it alone - makes no sense. He has circulation issues, stomace ulcers and constant bed sores. My Mum has osteoperosis and has just recoverd from a broken wrist and has a partial prolapse, which can be hanging out by the end of the day (sorry TMI) after being in her feet for so long. She also have a pinched nerve in her back.Does that sound like the sor of 'high needs of care' that would mean he got the continuing care? I know you can't say for sure.

Who will pay for a home then, the NHS?

chikydoo - thanks, am so shocked you were turned down. We have been told that because he was on a care pathway before, CHC should be ok, but who the F knows. They have some savings but what is my my supposed to live on once they have gone, just a state pension I presume. Marvellous.

CHC will be awarded on his needs. The Carer does not come into it. The assessment is very detailed and involves a whole range of professionals so no one would guess from limited info on an forum.
The CHC panel will decide.

Has he had a social services assessment as asked up thread ?

He has a social worker so I presume yes, but I will ask, along with all the other questions -thanks everyone.

How can the carer not come in to it? What is my Mum was not there? There is no way he could be left on his own with carers in twice a day. Whole process is mind boggling.

Don't know if I am speaking out of my backside but my 2 DC's (14 and 7) have continuing health care plans. It was the paediatrician who arranged it. Apparently the application goes in front of a board. Couldn't your stepfather's consultant help to sort things out. If care is needed on health grounds I thought it was free anyway.
We have found CHC brilliant and need no SW
Wish you and your mum all the best

Sorry many cross posts.

If CHC is awarded they will be responsible for your care not the local authority so your social worker would no longer be involved.

If you have a SW an assessment of need must have been done. Has your mum had a carers assessment ? She is entitled to her own assessment by a different person if her caring role is difficult.

Thanks, Step Dad's MS consultant just moved to Austrailia so waiting for a new one, I think because there are so many consultants involved in his care not one has taken the lead on sorting it out, the district nurse seems to have done this, huge love for DN, she is amazing.

Yes the DN's usually take the lead.

I would push for a carers assessment for your mum and respite care too but it depends on their finances. Does your area have a subsidised sitting service ? Ask the SW.

PenisColada is right, the CHC is based on the patient's needs not the carers.
However the carers views are taken into consideration re the care needs but not the effect it is having on their health.
The assumption that care is free via CHC if someone has health needs is misleading, they have to be complex, substantial, often unpredictable to quote some of the terms used in the assessment and there needs to be a need for specialist nursing, not just nursing or care by carers.
It is an extremely difficult area.
It does sound like he meets some of the criteria but as said before it is very difficut to say without looking at all the assessment.
I have filled a few in, some successful a few not but in the main we know which should get it and which do not meet the criteria.
Re the Consultant, they only realy carry weight as part of the Medical part of the assesment. They can not overturn the panel's decision.

The reason Carers needs are not relevant in the assessment is because the carer has no 'Legal' obligation to carry out the care at all. Most carers undertake their caring role because they have a sense of duty and feel that it is morally the right thing to do - but they actually don't have to do so at all.
(I am a carer). The assessment is carried out based on what care the disabled/sick person would need if they had to fend for themselves. In your case, this would be quite a lot of care - but as others have said the criteria for CHC are quite strict and there have to be complex care needs in certain categories to get CHC funding.

So my Mum should just drop the keys at the doctors and bugger off for good? Then he would be looked after. Madness. The reason he needs the CHC is because my Mum is mentally and physically exhausted and cannot do it anymore, it is 24 hours a day and she is near a full breakdown, GP has said this.

So maybe she needs to collapse for help to be given, maybe she should. Respite care is no good, a weekend twice a year, no use at all. She is doing all the work of a nurse, when she has no training, but that is OK also. Again, madness.

Yes, she could refuse to do it any more (Liable Family Rule abolished in this country in July 1948) but as is the case with many carers, they can't just walk away, as they love their husband/wife/mum/dad/gran etc too much (or in my case daughter). Also if the loved one doesn't qualify for CHC, and they have assets, then they will end up having to pay for expensive care - another reason why most carers do what they do. Equally, if Social Care and/or Health Services say that the sick/disabled person doesn't meet their criteria, then most carers have neither the energy or resources to fight them.

My DD has been successful in getting CHC - not for residential care (at the moment), just for home care and respite away from home. She was granted CHC 2 months ago, and yet they are still dragging their feet in putting services into place - even though we have identified a suitable place for respite and got them to admit that any they identified cannot meet my DDs needs. And so I struggle on - and yes I am expected to do single handedly what they send in 2 people to do in the few hours that they fund!

Sadly, it might take something as bad as your mum literally collapsing to trigger Social Care into action. If she happened to be admitted to hospital then they would have no choice but to sort something out, as the primary carer would be out of action.

Has your Mum been in contact with any Carers organisations in her area for advice? They may know who to chase re the CHC or be able to point her in the direction of a Case Worker/Advocate who can help them.

Sadly the system is not up to the job due to underfunding - and it is not going to get better any time soon.

Social services woul put in a package of care if you mum refused to do any more. There are a lot of carers who cannot do personal care and this care is provided.

Have they had a financial assessment ? Is it the case that they won't pay if they have been assssed as making a co retribution to their care ?

Has your mum had a carers assessment ? Carer breakdown is taken very seriously by social services. You really need to speak to the social worker or their manager.

Contribution

My Mum has been hospitalised with exhuastion and suspected nervous breakdown (still tbc), I feel releived in a way as she can get the help she needs to get better, my step dad has full time NHS nursing care at home at the moment, they are trying to find him a suitable home but it will take time, no room at the local hospital/s for him either!! My Mum's consultant has said the little and poor quality sleep over a long period of time has forced my Mum's mind and body to literally shut down, she could not stop crying and could not really hold a proper conversation and he hands were shaking. It was horrific and scary, but no things are moving apace. She has been asleep more of less for literally 2 days, with the help of drugs etc. The whole family has been brilliant, my mums sister, my auntie especially. I feel less worried which is wierd.

What a sad indictment of our hideously beurocratic system yet again failing people in need. What worries me is that the 'who pays' (health or social care) decision was in the system (presumably awaiting a panel date) whilst your mum and step dad were in desperate need. That's totally wrong. Social care should have ensured his needs were being met and your mum was being properly supported whilst his case was being considered; decisions regarding care homes can and should be made whoever is responsible. I am so sorry to hear they were let down so badly.