Any advice on this would be much appreciated. So I have completed the checklist with a social worker which was followed by a nurse yesterday. The nurse seems to think Mum will not get the funding as her needs could be met by a care Home. Here is an update on mums health.
She wakes between 2-6 per night (if on medication that affects her bowl this can be as much as 10+) I assist her onto the commode with a Ross return and then have to lift her at the hips to turn her so she is comfy. (Unable to move herself) on a morning I take her to the bathroom in her wheelchair where she will clean her teeth and wash her face. She then sits in her shower chair to shower in the wet room. (I let her shower herself and then help to do places she can’t) I then dry and dress her. She is then wheeled to the table where she awaits her breakfast of porridge which she feeds herself along with a large pot of tea to keep her fluids up. This is thickened to an almost custard consistency (she refuses to have it any thicker even though she is aware of the risks) she will cough and splutter throughout. Next is the toilet run for emptying her bowels. I help her on to the loo, pull her pants down (continence pants as although incontinent she still insists on using the toilet) fortunately for her she is not suffering with constipation. I will leave her to get on with her business and then go back to clean her up. She then sits in front room listening to the radio. She has a bell that she can ring to get my attention for various things, toilet, slippers on, pick up her tissue, put telly in etc. Evening meal is something soft as she finds it difficult to chew. Even though everything is cut up for her she will still cough/choke/splutter/laugh/spray food everywhere and shovel great big spoonfuls in her mouth which if pointed out to her only makes her laugh hence it spits everywhere. After about half way through her eyes are to heavy to open so someone will take over and feed her.
If Mum wants something doing it has to be done there and then, she will call or ring until someone has been summoned. If this fails she will do it herself which almost always results in a fall.
She has no empathy and therefore very demanding.
So that’s what a usual day looks like for Mum.
I have been told by the nurse that this does not require specialist involvement as it is something anyone can be trained to do (er agree as I do it) therefore does not meet the criteria. I asked for an example of needing specialist help but she was unable to do this as she couldn’t think of anything. She has nursed a patient previously with PSP and constantly compared this person to my mum. I have contacted a residential Home and they have advised that she would need to be in the high dependency unit due to her needs. (Is this specialist needs?) I intend to call round some other care homes to see what they would advise. My hope is to keep Mum and dad together living at home with me, however I have been of work sick for 2months with stress and have been given another month (this was due to my dad taking on to much and becoming really ill to the point we though we would lose him, fortunately after 2 weeks in hospital he is now on the mend)
I am desperate to go back to work, only I can’t whilst I have to look after Mum. Dad has been warned that he needs to be a husband and not a carer otherwise he will be back in hospital. He is 83.
The full assessment is due to take place on Tuesday with myself Mum social worker and nurse.
So if you managed to read all this then thank you and if you could give me any advice that would be great
Kind regards Sarah.
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Sarah1972
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What is your Mum's skin like? Does she need any specialist monitoring? ie does the District nurse come in to check, or any creams needed? You need to elaborate on your Mum getting up to get whatever she's wants, then falling. That's causing danger to herself and others and therefore, she is predicitably, unpredictable. Score big points for that. Her incontenance, could that be improved by having a catheter fitted? That needs specialist intervention. Would make life easier for you as well. What about her communication? Tell any tales on her that you can think of. Even if she only did something once, that could be classed as dangerous, make out its been regular. Steve once raided the medicine cabinet, when I was out, but couldn't remember if he took any pills. I let them believe it had happened more than once.
Sorry I can't be more helpful. We were one of the lucky ones, that got CHC funding easily.
Thanks Anne that is most helpful. During two of mums recent falls she has pulled me down twice and on one occasion I banged my head which knocked me out for a split second. I don’t think they would fit a catheter due to infection ? I have to complete a diary of her goings on between now and next Tuesday to give them an idea.
I’m sure the nurse is set against it so need to get as much evidence as I can.
It seems the systems vary from country to country. Our only option here in Canada was to put our mom in a personal care home. (We cared for her for 6 months at home). Our mom could not sleep and this created a lot of anxiety for her. We eventually requested quetiapine which helps her sleep and also helps a bit with patience but not entirely. The thing is your mom could live quite a few years and you will need to consider your own health and family in making care decisions. Now I see my mom three times per week, I was able to return to work and spend time with my own kids and grandkids. I would encourage you to look at the big picture, your mom is not the only one who needs you.
Thank you Erna and I do hear what you are saying. Unfortunately Mum and dad moved over 200 miles to be nearer to me so that I could support them. I really want to keep them with me some as long as possible and fear it will cause huge problems if I suggest a care Home. Dad has already made it clear that there is no way she is going into a home and I know he would do it himself if I refused but I can’t take that risk as he has already been admitted to hospital for two weeks as the caring for Mum took it’s toll on him very badly. He was only allowed home from hospital if he promised to be her husband and not her carer. At that point he agreed to accept help and have carers come in, only when we looked into it it was £3k per week as need two carers on a night at £160 each. Hence trying for CHC so that would at least find care on a weekend and then I could hopefully look to going back to work. Either way options are poor. Will speak to dr though about sleeping meds as at the moment she has lorazepam and mirtazapine for pain and anxiety
Erna that is very true, and while we may hold an "ideal" in our mind (mom&dad together at home) that ideal cannot be allowed to consume your (sarah) own life and health. That is not viable in any value system.
I hear what you’re saying and thank you for your concern. But will keep plodding for a little longer. Time will tell especially once I (hopefully) get back to work.
I agree with what Heady has said. You completed the check list, did you see it or did they read it to you? If you google NHS Continuing Healthcare Toolbox for Professionals you will see the full version of the form .
Page 2 of the checklist:-
The first column Says...Behaviour, no evidence of challenging behaviour. This was the column they circled as my husband wasn’t violent. I queried it and said he wasn’t violent but PSP has made him stubborn and unpredictable making him a danger to himself and others. I then quoted a whole list of falls which were dangerous to him or to me or causing damage to the house. They then circled the last column. Make sure you tell them you fell and were knocked out. I queried most things, starting often with
Yes but he........
It’s a very long read but well worth the effort so you know exactly what they are looking for. I had all my answers ready (in my head). The people (panel) who make the final decision have only what they see on paper to go on. No one sitting on the panel will have spoken to anyone about your mum so you have got to tell them what she is like on her worst day.
When they asked me how often Colin fell, I said they had asked the wrong question. It should be how many times would he have fallen if I hadn’t been there to stop him falling. I told them he would fall every time he stood up if I wasn’t there to save him.
This is just a suggestion but Colin got CHC the first time of asking. The panel sat on a Friday and he had a night nurse by the following Wednesday. I get very annoyed when I hear the struggle some folk have getting it. It is not a fair system at all, people in different counties having different decisions made. I never took CHC for granted and was very grateful for every penny.
Hi Sarah excellent advise from all we have just put Mum into respite as 3 years of care had taken its toll on my sister n I everyone tells us the carers need to look after themselves also easier said than done I know. That may be your solution 2 weeks respite and then you have the care homes assessment also take care good luck x x x
Do download the toolbox and print off the score sheets. Take your time and complete them on your own. Little by little. For each section think about the worst events and don't hold back.
Her being angry or overly demanding or difficult? Get it down. Her taking risks if not watched? - Get it down.
Do tell them it is too much for you if that is the case. Do tell them you are going back to work. They should be assessing as if you were not there anyway.
In each explanation box - don't waffle - give examples. Examples are evidence and this is an evidence based assessment.
Fill in your scores.
When they come to the assessment sit wish your sheets in front of you give them the evidence from them. At the end of each section ask them what score they have given and if it is lower than yours ask them to show you how that fits the definition for that score and argue your point. It is in the guidelines that you should be encouraged to be actively involved in the scoring and using their scoring system is completely acceptable. Many do it this way.
Lastly - If you disagree with their final score on any section ask them to record your disagreement. That is useful if you need to appeal.
All of this sounds horrifically challenging toward them. Trust me it is highly acceptable (its in the guidelines) and they will not be upset or angry. If they challenge you on your approach - Just say that the guidelines require you to be fully involved.
This is really helpful Kevin we are at the same stage so I am hoovering up all of the information I can.
At our meeting last week someone ( forgive me cannot remember who) said that they recorded the meeting in full knowledge of the assessors explaining it was for family use only. This had apparently been helpful so I am considering doing the same. Trying to take everything in when we are anxious is difficult.
Tippy I should have everything put together by tomorrow, if you want to email me I will send you all my paperwork over so you can cross reference to see if there is anything you can add to yours.
Kevin’s thank you once again I will put your advice into practice. I hope you are feeling better, by all the comments and posts you have definitely been missed by all.
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