Care home can no longer cope and NHS Continuing Care Assessment questions

My mum has had PD since the early 1990s, she is now 85 and has had a lewy bodies dementia diagnosis as well since 2015. Mum had to move into care four years ago because my dad who is eight years older (now 93) was taken into hospital. He recovered and returned home but could no longer be her full-time carer. She has been in a wonderful care home (residential not nursing care) who are very caring but they are now saying they can no longer cope with her needs. She has not been able to make herself heard for a couple of years now, we get the odd snatches of conversation but she is definitely still lucid when not hallucinating. She is starting to struggle to know what to do with food, she stopped being able to use cutlery two years ago. She is about 6 stone and her BMI is 16.5 which is under the 18.5 minimum meaning she is at high risk of malnutrition. This is managed by milkshake top-ups. I think the main problem the care home are having besides the nutrition is her mobility as she is having regular falls. They told us that they have done an NHS Continuing Care Checklist and she is scoring very highly in a number of areas. I know she needs two severe/priority or one severe and lots of high for this to go through more easily but also about the law where it should only be considered a guide and not a score system. I I enquired with a nursing home near me what they would offer my mum and they said they would put her in a tip and tilt chair with a restraint when she was a fall risk. They said rather than move her we should ask if the current care home could do this. They have said it is Deprivation of Liberty and they are not allowed to do this (they had tried to do this for someone else in the past). I’ve written to the top management and asked them about their policy on this because if I can keep her in the same care home where she is happy and settled with a new chair I think that is fairer to her than moving her. I also spoke to the dietitian who said that mum would not get any extra support from her team if she was in a nursing care home. So I am struggling to understand what the benefit is in moving her. Also, the only other care home near to my dad is one my mum has always told me she never wanted to end up in, she has always hated it. I know care depends on the current staff but I can’t bring myself to make her spend her end of days there. She has mentioned the other care home since she has been in this one, she hasn’t forgotten it. My dad is quite doddery now but still gets about, he does have a few falls but also manages to get to the football match so can still manage steps and stairs. Their bungalow was a new build in 2000 and has wide doorways and ramps etc. I am thinking if they insist she has to leave this care home that I might fight to bring her home if I can get full-time care in, my dad wouldn’t be able to care for her and my brother and I both work full-time and could not financially give up work. We got a quote to get the bathroom changed to a wetroom in 2014 when she was still at home which she refused to have done but she has money that could pay for this. Unless my dad dies suddenly, potentially he could need to go into care at some point as well. I really would like to know what type of care we could expect if we can get NHS Continuing Care, I know that is a difficult question because it depends on her medical needs but I don’t want to get my dad’s hopes up that she is coming home if they say they will do NHS Continuing Care but only a few hours a day. Her medical needs are unpredictable so I am wondering if anyone else gets 24 hour care for someone with end stage PD & dementia in the home? My dad already pays privately for carers to help with washing clothes, ironing and cooking but he spends an extra £120 a week on the carers to ferry him back and forth to the home as well to see my mum. He likes someone with him who can help with talk to mum, he is deaf, she can’t speak loud enough to be heard so he needs an interpreter. He misses her terribly but I would never move her back home if they wasn’t 24 hour care in place from external providers. I’m very confused about what to do. Sorry for the long post, hoping someone can share their experiences. Thanks. Karen.

I believe that my late husband qualified for Continuing Health Care but was only assessed for nursing care. You have a battle on your hands.

I would suggest to others who may have to consider a care home that they choose one that is not purely residential but also has the nursing element. That way, a move is not necessary when needs become greater.

Best of luck.

1 Like

Getting funding is an uphill battle. The process involved in NHS continuing healthcare assessments can be complex. An organisation called Beacon gives free independent advice on NHS continuing healthcare.

Visit the Beacon website or call the free helpline on [0345 548 0300](tel:0345 548 0300).

Depending on your situation, different options could be suitable, including support in your own home and the option of a personal health budget.

If it’s agreed that a care home is the best option for you, there could be more than one local care home that’s suitable.

Your CCG should work collaboratively with you and consider your views when agreeing your care and support package and the setting where it will be provided. However, they can also take other factors into account, such as the cost and value for money of different options.
There are companies that provide live in carers 24/7 which if both parents need help and support can often be a lot less expensive than care home fees. Don’t forget other benefits they may be entitled to as well. age UK are very helpful and informative .A visit to them wouldn’t be a waste of time .

1 Like

Thank you. I have actually just contacted Beacon and then saw your reply. I have decided to pay for their advocacy service for the initial assessment. My brother wanted to wait to see if we need to appeal but time is not on our side, I don’t want my father put under this stress during the last years in his life. The care home she is in have a company policy that they don’t look after anyone who is entitled to CHC. She scored 4 A’s, 5 B’s and 2 C’s on the checklist which I know is not a guarantee in any way that mum will get it but Beacon said it is a good start. Apparently only homes with nursing care have the insurance to be able to provide the tip and tilt chairs for some reason but hopefully won’t need that now anyway. Next step is to get a wet room put in at their bungalow which my father now needs anyway.