Nursing homes say "unable to meet needs" of mum but NHS say palliative care required not hospice end of life care.

[listitorchuckit]

As a family we seem to be in a catch 22 situation in respect of obtaining the right care for 88 year old mum.

Hospital are keen to discharge her as there's nothing more they can do for her (she's now bed-bound, catheterised + using incontinence pads and on a syringe driver for pain relief). Care at home isn't feasible, we're told that she requires a nursing home place. The local nursing homes which state on their websites that they provide palliative care, are saying that they can't meet her needs.

She has terminal bowel cancer, is barely eating, just about staying hydrated, but pain is being controlled by morphine pump and she's reasonably compos mentis.

What do we do ?

As other people have said, this is the hospital's problem to solve. It's a situation I have seen many times in 20+ years working in palliative care.

As she has a syringe driver up, I expect she is already known to hospital palliative care and going with CHC Fast Track. It's likely the sticking point is the syringe driver - depending on where you are in the country, in some areas there are very few care homes that handle syringe drivers. It sounds like this is the case where your mum lives.

If you have been left to ring round care homes that isn't very fair, either the Discharge Planners or the Hospital Palliative Care team will know which homes do syringe drivers, rather than leaving you to waste your time and get super stressed.

As you have found the hard way, a care home advertising palliative care is not the same as them being able to manage a syringe driver. District nurses will not generally go into a care home with nursing. They do go into residential homes, which isn't helpful for you as your mum needs nursing care, not residential.

Hospices are short stay only and have a lot of pressures on beds, they will be prioritising those with uncontrolled symptoms, which unfortunately leaves your mum stuck in hospital.

I would hand this back to the Discharge Planning and Hospital Palliative Care teams to say you are struggling to find a care home that can manage the syringe driver.

Please do not let your mum be discharged home.. 3 years ago almost exactly my Mum died an awful traumatic death from bowel cancer.. she suffered for hours overnight in her flat with a respiration rate of 40 breaths a minute after a sudden deterioration; & despite our desperate calls the district nurses never turned up, and the hospice nurse was unable to come out. An ambulance came briefly but the paramedics did not want to take Mum to A&E to pass away on a trolley in a corridor, unfortunately neither did they want to give the end of life meds that were in Mum’s kitchen ready for this eventuality (which we had been promised were there for any paramedics or district nurses to give!).
Mum was not on a syringe driver as her pain had not been too bad up to that night; she was breathless & nauseous & struggling to walk around the flat, but was still able to take tablets.

So basically after that terrible experience - I mean I work in a hospital and have had some awful experiences prior to working on my current ward - but watching my Mum suffer & die slowly without any end of life drugs was the most traumatic of all - I would say never rely on any of the services on offer outside of an acute hospital or hospice.
And regarding a hospice - choose carefully.. a friend did work as a staff nurse in a local one and did not see good practice. Her Mum passed away in another local hospice later on however and they were very good, according to my friend.

Your Mum should get CHC funding so do push for that, my Mum had it and she was not even on a syringe driver as I said above.

Things have moved fast today, hospital put us on to the local hospice who provided a list and after ringing round ourselves it seems there are just 2 nursing homes who would take mum.
Both of these homes were deemed to "require improvement" in pretty much every category at their recent inspections which doesn't fill us with confidence, but my DSis and I had booked emergency leave from work so we visited both homes anyway.
The rooms are very small, one has a window facing a brick wall with net curtains to disguise it and the other had a view of the home's bin storage area. I know I'm being over dramatic but they may as well be prison cells.

I realise that sounds grim and not what you want for your mum. But leaving aside the views, can these care homes meet her needs, are the staff kind and efficient, and would she be better there than in hospital?

My mother was in a lovely care home, but the small room where she spent the last 18 months of her life looked out on a brick wall. I didn't love visiting that room myself but she couldn't have cared less and was very comfortable there.

I know this must be so difficult for you, and I hope it works out.

@listitorchuckit I’m sorry op ,that’s a really hard position to be in. With the hospice I worked for , we had community palliative nurses whose role was also to support palliative patients in nursing homes, if this is the case where you live then hopefully there will be someone externally keeping an eye on things. Please make sure you have the chance to talk through things like DNR or what treatments your mum will/ won’t accept ( eg. Antibiotics for infection, re-admission to hospital ) before she leaves hospital . The priority is to give your mum dignified care and keep your mum comfortable , not to prolong life at this stage, and you want to be sure that your mum has ready access to the medication she needs to minimise pain or other symptoms . I would say as well, don’t be pressured by the hospital into agreeing to something that you really feel is not right for your mum.

She should qualify for NHS Continuous Care. This is free of charge whereas you pay in a nursing home. (England).

My dad was in a similar situation. No hospice place was available but then a place came up in the NHS palliative care unit. He was there for 3 months before he passed.

My mum had been in there for over a year a few years previously.

We didn't have to pay for either of them as it was NHS and the care was excellent as it was nurse based care and the staffing levels were amazing.

You are not being over dramatic at all.

One of the NHs I visited for my late OH was plush as could be in the residential end - then they took me to the nursing end which involved going down a tiny ancient lift with metal mesh doors into a dingy basement corridor. The cell-like room they showed me had a tiny window up high criss-crossed by a fire escape, a lino floor with a stark hospital bed in the middle.

As I was leaving the nurse showing me round said the manager was in her office waiting to speak with me - I said I did not want to speak with her and that under no circumstances would my dear OH, father of my lovely children, be coming to this dump..... I sat in the car park and wet.

I sold my home so he could go into a beautiful purpose-built NH, but it stuck in my throat to know that the money from our lovely home was mainly going into the pockets of rich investors rather than the hard working and loving care workers who nursed him to the end. What a bloody awful system it truly is.

listitorchuckit - my heart is with you.

CHC will not place anyone in a care home which has current safety issues, their knowledge is more up to date than CQC.

Can you ignore the visual of the room (and care homes will give the worst rooms for CHC as private clients pay more) and assess if the home comes across as caring? Things that may be important to you, such as the view of the bins, may not be important to your mum if she is very tired and spending a lot of time asleep. Are they going to answer the bell, make sure she is comfortable, not get tired of rearranging the pillows, make sure her hair is done?

I have seen patients in tatty homes where the staff really cared, and posh homes where they didn't give a stuff.

@AnnaMagnani

"Things that may be important to you, such as the view of the bins, may not be important to your mum if she is very tired and spending a lot of time asleep".

Mum is currently alert/awake during most of the day (apart from her afternoon nap) and the only good part of being in hospital was the view from the huge windows. She's had a very outdoors-y rural life. Moving to a built up area is one thing but I fear that being bed bound with nothing to see out of a window but a brick wall or bins will be very depressing for her. The palliative care nursing homes with garden views are all saying that they can't meet her needs.

Is it possible that if she were self-funded the other homes would earn more income and hence be more willing to take her ?

Probably not, it will be about whether they have nurses with the competencies to do syringe drivers. I've never been very clear about what 'palliative care' in the advert for a care home actually means and Google isn't helping me with the answer. Every care home has residents that die there, it's the nature of care homes.

It's been several years since I was involved in this, you used to be able to 'top up' the CHC funding for a nicer room but I have no idea if you still can, however it would be worth asking if as a family you have the means to do this.

Can Macmillan help at all, as she has a cancer diagnosis?

Not necessarily. Quite often the “nicer” homes just don’t have the specialist nursing staff to cope with someone needing palliative care. That’s what we found in the same situation.

It is very difficult.

My mother was self funding when she was moved to the ground floor room with a brick wall for a view, the move from her previous much nicer room with sea view was purely for practical purposes because she had deteriorated and it provided quick easy access for carers and equipment.

Quite a lot of my family and friends have died in the past ten years and only one went to a hospice as they happened to have a bed available for her final two weeks. All the others died either at home with a district nurse coming in for meds, or in a care home again with a district nurse coming in as needed. One of them had 'hospice at home' but that still required a lot of input from family.

Mum does sometimes require a top up injection in addition to the syringe driver and I fear she'd be left in pain waiting for that with a visiting community nurse arrangement.

If she is currently able to take liquids, even in small quantities , she could take oral morphine whilst waiting for the nurses to arrive ? Or is there an issue with taking it orally because of absorption ? It might be that the amount in the driver needs tweaking, depending on how often she is having breakthrough pain ?

It still might be worth asking around and seeing if there are any nice residential places with space for her, it doesn't sound as though her ' nursing needs' are complex other than the syringe driver.

Another alternative is paying for 24hr live in care, but that would be very expensive and would still require District nursing input, and would obviously depend on if there was space for someone.

I expect it’s down to their current staffing and their skills / experience.

You will need to look further afield or accept that hospital is the best place to meet her needs at present

Is there any chance of hospice at home?
My friend's dad had this so he was able to stay at home but had nurses come in over the day. This was through Macmillan or Marie Curie- sorry was a while ago so not sure.

Came here to say this, especially if time is of the essence the rapid discharge planners at the hospital were some of the few people there who bothered to keep me in the loop and push for the right help. They were able to offer me three places to look at as potentials for my DGF, and we were lucky enough to find him a wonderful care home for his final days. I’ll never forget their professionalism and kindness. Home was not suitable and I would never have got over him dying on the awful ward he was stuck on.

Hi, I’m sorry you’re having to deal with this at what sounds like a very difficult time.

From what you’ve described, has a Fast Track NHS Continuing Healthcare referral actually been completed for your mum? Where someone has a rapidly deteriorating condition and may be entering a terminal phase, Fast Track CHC can sometimes be relevant and can avoid the usual full assessment process.

I’m a Director of Care Necessities and we specialise in NHS Continuing Healthcare matters. I’m not suggesting from a forum post alone that your mum definitely qualifies, but given the reference to palliative care, a syringe driver and nursing homes saying they are unable to meet her needs, I do think it would be worth making sure the CHC/Fast Track position has been considered properly.

It may also be worth asking the hospital discharge team or palliative care team exactly who is taking responsibility for identifying a placement that can safely meet her needs.

If it would help, you’re very welcome to have a look at www.care-necessities.co.uk or get in touch through the website.

I hope you’re able to get some clarity and the right support in place for your mum very soon.

Thanks for the additional posts everyone.

To answer a couple of posters, Fast track funding was successfully applied for.

Mum is now in a dismal room in a nursing home, I've noticed a decline in her mental health already. Staff seemed kind when we are visiting but mum has filled us in on a couple of issues which occurred whilst we weren't there and we're waiting to see if they were one-offs before we refer to a manager.
We are looking further afield for a nicer home but time is against us and another move would be very hard on her physically.
I wish we could care for her at home but we simply can't and she keeps insisting that my sister and I don't get into trouble with our respective employers for needing a lot of time off.

Just wanted to offer some solidarity OP, not the same situation as my Mum has a degenerative neurological illness, but my Dad has reached the absolute end of his tether caring for her at home and I’ve been trying to find a nursing home place for her and it’s dire. Finally found something in a specialist neuro home, run by a charity, but suspect social worker is not going to be happy with the weekly cost when we run out of private funds (CHC was rejected initially, we will be reapplying but only so many hours in the day so that’s on back burner whilst getting Mum settled). But I’ve had multiple places telling me they couldn’t accommodate her needs let alone provide good quality of life - and absolutely horrified there is no CHC as they can’t provide the care without the extra money from that.

Not very comforting but it seems nursing places are hard to get if you’re even a little bit complex.

I hope you manage to find something else and your Mum can cope with the journey. Everything crossed for you.

I have worked in nursing homes for almost 10 years, involved in the management side too. Can I ask, does your mum have any behavioural issues at all? The reason I ask is we use the phrase ‘can’t meet their needs’ for these type of patients, syringe drivers and palliative care are no issue at all in actual nursing homes as there are nurses on hand 24/7 who are used to this. Reasons we have declined patients and stated we can’t be their needs is mainly behavioural issues

Nursing homes don't like to take people for eol care only. Many manage well when their longer term residents are eol, but to admit for a few weeks only judt doesn't make financial sense. There's all the admission paper work, the deep cleaning between residents etc.

Sorry to be blunt but they want people who will stay a year at least realistically.

Can she come home with hospice care? It's generally much better than domiciliary care and is often provided by registered nurses.

No behavioural issues that we know of, she has become a little grumpy due to pain meds not keeping up with pain levels. Since being on the syringe driver though it has mostly kept the pain at bay.

People keep saying hospice. But they have very strict criteria. Our local one has criteria such as pain that can't be controlled. None of my elderly relatives have met the criteria for the local hospice when they were on palliative care or end of life.

As the hospice weren't willing to admit her, as she wasn't deemed to be close enough to end of life, we had no choice but to find a nursing home.

We were already being let down with failed promises for support that she was supposed to have been receiving at home before she went into hospital, including by the community nurse. My parents home is 20 miles from the nearest town, things may be better in a more urban/less remote area. Having strangers coming and going was really unsettling for my dad who has been diagnosed as in the early stage of dementia.