Physio / convalescence for 90 year old mother in Brent

roadweary

Hi,

Up til May my mother had lived at home with carers helping and a sharer (Two Generations) living there and offering up to 10 hours of companionship per week.  She would go up and down the stairs to the bathroom her bedroom etc.  She has had dementia for a few years but was generally doing ok.

She came down with a UTI and then diarrhea and ended up in Northwick Park Hospital, Brent.

She spent 4 weeks in a bed with a saline drop, catheter, antibiotics etc in a side room and now is in the main ward, no catheter etc.  She's been in a hospital bed for around 5 weeks in total.

The hospital want to discharge her.  My sister went to see her yesterday (I live hours away) and was shocked at how she didn't even have the strength to support the weight of her own head now she is not lying totally flat.

One thing I find shocking is that nobody is doing any kind of physio with her or anything to address her total loss of strength.  

The other thing is that my sister only just found out from a friend that rather than just discharging her, she should be offered up to 6 weeks of convalescence and I assume as part of that provision some physio / recuperation would be planned.

My sister is going back to the hospital tomorrow to try to speak with various people to discuss that.  Apparently she needs to see a discharge co-ordinator and there's something to do with a Multidisciplinary Team  (MDT) who should be offering a re-enablement package?

Does anyone have any details / pointers on that so that if they are less than helpful, we can point out their legal obligations?

Thanks.

gwynlas

Sorry to hear about your mothers detioration but unfortunately it is quite comon for elderly patients to be overlooked in so many ways. Unfortunately unless you and your sister avocate for your mother then service might be lacking.
You could look up theje local social services website for guidance on what is provided and what can be assessed for. as well as  Age UK
From the Multi Disciplinary Team your mum should be seeing both physiotherapy and occupational therapy who both advise on maintaing strength and maintaing the needs of daily living.
Of course in an ideal world your mother would have a period of convalescence and rehabilitation but lack of money usually precludes this.
Prior to discharge there should be a clear plan in place regarding housing care needs, nursing needs and nuutrition but in reality most councils offer a maximum of  four visits a day with the latest helping her to bed any time after 6.00pm

KxMx

You mention the phrases unsafe discharge and high risk of re admission, to get a plan into place that you are all happy with.

elsien

There is no automatic right to 6 weeks of convalescence. It is funded by health, not by the local authority and depends on the individual circumstances and discharge route.

As your  mothers needs have changed,  they may be looking at doing the CHC health funding assessment. This process is different in different geographical areas . People are quite often discharged to a care home for 4 to 6 weeks for further assessment, and that may be what you are thinking of.  So another question would be whether she is going to be to be assessed for health funding, and if so where?. This is where the hospital discharge team would be involved - medically  fit for discharge doesn’t actually mean that people are necessarily fit/healthy, it just means that they no longer need an acute hospital bed although they may still need some nursing care and It doesn’t automatically follow that they will be sent home - particularly if there are stairs and a higher level of care to be taken into account. 

I would be surprised if she hasn’t seen by an OT or physio at least briefly, although hospitals are notoriously bad at getting people out of bed and maintaining mobility. This is a direct question that should be asked to the ward. Unfortunately people who stay in bed for any length of time lose muscle tone very quickly and even with physio it’s not guaranteed that she will get back on her feet. The other problem with physio for people with more advanced dementia is that if they can’t remember the instructions (eg how to safely use a walking frame), it’s not always that helpful and there’s not always much the physios can do in those circumstances.
 
Do either of you have power-of-attorney for health and welfare? 
Your sister needs to ask what the safe discharge plan is, remind everyone as a limited support she has at the moment, ask about an OT assessment of her home, and ask specifically about the CHC nursing needs assessment. 

https://www.nhs.uk/social-care-and-support/money-work-and-benefits/nhs-continuing-healthcare/

Also to add that you have to consider the fact that your mother may not regain anywhere near the degree of mobility that she had before, so can changes be made to her home to allow her to return in the longer term, for example a downstairs bedroom?
The process would be, (in my area, at least ) if she does have increased nursing needs, to go to a care home while that assessment takes place then if not fully health funded the local authority would step in to revisit the care act assessment, which I presume she has already had in the past if she has carers, unless she is fully self funding and sourced those for herself. 

elsien

The statutory guidance is here, but it’s not particularly easy to read. 

https://www.gov.uk/government/publications/hospital-discharge-and-community-support-guidance/hospital-discharge-and-community-support-guidance

roadweary

Further to this, my mother is still in hospital, but they are pushing heavily to discharge.  They want to organise up to 5 carer visits per day, but all at my mother's own cost.  Surely that can't be right?

boots_babe

Having been on a similar path with my parents over the last year, I have found how difficult it is, and that there is no obvious place to go to for help - I had no idea what should happen, who should be doing what, how to find out. It was awful, so I know what you are going through.

I'm still learning myself so I'm not sure I'm best placed to give advice, but I couldn't not reply. 2 things I found really helpful and which I'd strongly recommend to you are:

1. contact Age UK. They were really helpful. They have lots of information online, but I also called them. I was able to have a fairly lengthy advisor call with them, who let me talk through my concerns and questions, and then either answered the points and/or signposted me suitably. I'm so glad I did this as it helped me to become more self-informed to know what to expect and to know what rights my parents have.

2. I found a forum dedicated to caring for people, which is full of others with experience of this, and can also provide advice and pointers. The link is https://forum.carersuk.org/

I've found that unfortunately, you do need to really stand up firm and advocate for your parents, otherwise things don't necessarily happen as they should. It shouldn't be that way, but it seems to be in my experience, so get yourself armed with all the information then you'll be in a stronger position to have the important conversations with the relevant medical teams. 

Best of luck.

elsien

roadweary said:

Further to this, my mother is still in hospital, but they are pushing heavily to discharge.  They want to organise up to 5 carer visits per day, but all at my mother's own cost.  Surely that can't be right?

That really does depend on what discharge pathway they are using, as per the link I posted above. Have you asked? You really need to get hold of the discharge team and ask about short-term reablement care and if that isn’t being provided, why not? The answer is likely to be because it won’t benefit her. 

If the visits are arranged by social care rather than by health then all social care is means tested. 

So if your mother is likely to be a self funder and is not eligible for full health funding, then she will have to pay in the longer term even if there’s a few weeks grace in the interim. So once she’s out of hospital who will be reviewing

Are you sure that they said will pay, rather than might have to, because the financial assessment tends to come a lot further day in the line. 

GDB2222

Your mum has been so ill that she had to be admitted to hospital, and both the illness and the time in bed have taken an awful lot out of her. It seems like she has spent roughly 10 weeks just lying in bed, with all the associated muscle loss, and realistically she may never become ambulatory again. It must be distressing for you to see how rapidly she has gone downhill. 

To give her the best chance of standing on her own feet again (literally!), she will need pretty intensive therapy. You would need to discuss this with the physiotherapist but possibly mum could benefit from more than one session a day. It will take months of therapy to have an effect. I don’t think that there are any key phrases to say or buttons to push that would get the NHS to fund this level of help.

So, the real question is whether you are prepared to throw quite a few hundred pounds a week of family money into the pot, to pay for physiotherapists to try to help mum, without any guarantee that she will be ambulatory at the end of it. Most people benefit at least emotionally from all the care and attention, though. 

I’m sorry for being so bleak, but we have been through this a couple of times in the family, and one of the issues is that the healthcare professionals know perfectly well that there’s not a good prognosis, but they are not very good at sharing this very difficult information with the family.