Advice please

Hi, I’m new to the forum. My 38 year old daughter has been in end stage renal failure for 2 years, on dialysis 3 x weekly. In March last year, she fell and broke her right hip and knee which required 2 surgeries and a metal rod in her leg. She couldn’t use stairs in her home so OT agreed they would either extend the ground floor or put a lift and wet room upstairs. In the meantime, they offered a care home nearby which is mainly for Dementia care. We have an adapted granny flat so brought her to stay here for 3 months recovery etc whilst her husband and 3 year old lived in their own house. In June she had a severe stroke, leaving her paralysed in her left arm and leg which left her completely immobile and in need of carers and hoists etc. In November, when the knee still did not heal from surgery, she was diagnosed with sepsis and rushed in for an emergency amputation of the right leg. She is completely in control of her brain and as sharp as she was pre stroke. 10
Months on and still nothing has been done to facilitate getting her home. She has carers 5 x daily and they refuse to give us night care despite knowing that I am registered disabled and use walking aids and wheelchair. Her bowels are a huge issue and I often have to clean her 3 times a night; she’s a big girl. And I’m not! They still refuse to help and each time we ask for night care they say she has reached the ceiling limit on care costs and if we want more care, she has to go into a care home. Obviously, she’s terrified of that scenario, and she’s so young and alert. Sorry it’s such a long drawn out story! Any advice would be appreciated. I don’t know what to do next but I’m worn out! My son in law told the case worker we would need help for 2 weeks in February at least, because I’m
Going away and she can’t be left alone at night and the case worker asked him why I can’t cancel
My holiday! I’m not her carer, I’m
Not registered as her carer - I feel trapped by their system, just because I won’t put a young mummy into a care home! Thank you for reading.

Welcome to the forum.
Please can you clarity if your daughter is funded by Social Services, or NHS Continuing Healthcare?

Having re read your post, please can you clarify the current situation.
Where is she at the moment?
Who has told you she can’t have more than five visits a day?
Who has told you that there is an “upper limit”? Do you have that in writing? I suggest that, like Baldrick, you develop a “Cunning Plan”. In my family, they are known as Dennis Letters, as I once had a boss called Dennis who taught me to do them.
Write an email to whoever is in charge, and ask what the current situation is?
“Please can they reply by email so that you can go over the email several times if necessary to understand fully”.
Ask if there is any emergency cover at night
Please could they provide an extra carer visit as …

The important bit, hidden in all this, is their maximum set limit of carer visits, because that is UNLAWFUL. Services have to be arranged on the basis of need.
In your daughter’s situation, as a young woman, of course she doesn’t want to be in a nursing home for the elderly, Ask, in your letter, where the nearest specialist unit is for young disabled. (NOT that you want her to go to one, but you need to tell them in writing where it is, because the chances are that it will be a long way from her husband and child.

Once you have all this, in writing/email, then you have all the weapons you need, evidence that there is nothing suitable locally, and as she has a husband and child who need to be close, then they MUST arrange suitable cover in her home or your Granny Annexe, to maintain her Human Rights to a “normal family life” as much as possible.

This right is dealt with in the NHS Continuing Health Care Framework. You need to read the Framework, print it off if possible and go over the relevant bits with a highlighter pen.

What is your daughter’s financial situation? Does she have over £6,000 in savings in her own right? If not, she is probably entitled to Legal Aid. Contrary to what many will tell you, it is available under certain circumstances.

Thank you so much for your really helpful response. She is funded by NHS continuing care and she has a case manager who has told us if she needs night care, she has already reached the maximum allowed/money and would therefore have to go into care. A GP and district nurses have said she needs night care because she has bowel issues 3 or 4 times a week, and she has constant bed sores so needs to be cleaned up immediately and should also be turned through the night. I am disabled and unable to do
These things for her but they just say I have to get on with it! It’s ludi, because if I went out and voluntarily did care for someone else, I would lose my own disability benefits!! Thank you again.


She is funded by NHS continuing care and she has a case manager who has told us if she needs night care, > she has already reached the maximum allowed/money and would therefore have to go into care.


Main thread :

That aspect covered … I’ll trawl myself if needed !

Scrub that :


Should You Be Asked To Pay an NHS Continuing Healthcare “Top-Up” ?

With a loved one living in a residential or nursing home will probably be familiar with the concept of top-up fees. These are third-party payments which bridge the gap between the cost of care home fees and the amount the local authority is willing to pay. They are so common that the charity Independent Age calls them a “secret subsidy” propping up the residential care system. So you may not be surprised if a social or healthcare professional asks you for an NHS Continuing Healthcare “top-up” to help meet the costs of care. But here are some things you should know before you agree.

There is no such thing as an NHS Continuing Healthcare “top-up”
While the legislation governing local authority social care expressly provides for “topping up” care fees (though only in specific circumstances), the NHS are not permitted to ask for an NHS Continuing Healthcare “top-up” for assessed needs. The only way you can “top up” an NHS Continuing Healthcare package is if you choose to pay for additional private services. These are over and above services to meet your full needs as set out in your care plan. They should be provided by different staff and preferably in a different setting, though there should be liaison where necessary to ensure continuity of care.

What do the rules on NHS Continuing Healthcare say about covering the cost of care ?
The National Framework says the funding package should be sufficient to meet all needs in the care plan. The CCG should base this on its knowledge of the local costs of services for those needs. It is also important that the models of support and the provider used are appropriate to the individual’s needs. And they should have the confidence of the person receiving the services.

So why is one in five recipients paying an NHS Continuing Healthcare top-up ?
Yes that’s right – one in five. According to Continuing to Care?, a major report released before Christmas by the Continuing Healthcare Alliance, almost 20% of those awarded NHS Continuing Healthcare said the funding did not cover the full costs of their care, resulting in them having to pay “top-up” fees. This fits in with what we are hearing from clients here at Just Caring Legal.

Could social workers be blurring the lines between local authority and NHS Continuing Healthcare “top-ups” ?
We are hearing of an increasing number of cases in which social workers are taking the main role in dealing with NHS Continuing Healthcare cases. Could this be blurring the lines between NHS and local authority funding? It can be difficult for those applying for NHS Continuing Healthcare to understand the different rules that apply to each, around areas such as top-up fees. It is right that social workers play a vital role in NHS Continuing Healthcare cases as part of a multi-disciplinary team of professionals assessing care needs. But once eligibility is established for NHS Continuing Healthcare, like all NHS care it is designed to be free at the point of use.

This is one of the founding principles of our NHS and its constitution: that it should provide a comprehensive service, available to all based on clinical need – not on the ability to pay.