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 ?

I’m sorry, that’s a hard situation to be in. I’d definitely involve social services.

Where I work none of the local nursing homes are able to manage a syringe driver (despite charging an absolute fortune and claiming to offer palliative care beds) but what tends to happen is that the district nurses go in once a day to renew the driver. Might that be worth discussing with the discharge team? I’m so sorry that your mum is currently stuck - it’s a horrible position for you all.

And my mum had very good care at home with us in a hospital bed in the living room with carers and district nurse coming in. All arranged by hospice charity (for mum and dad, six years apart). At no cost to us.

Sadly our local hospice has had to completely cut ‘hospice at home’ care due to lack of money as well as other services such as compassionate neighbours. It’s terrible that hospices are so under funded and rely on charitable donations.

Can you get the district nursing service involved? My mum was already in a care home (not nursing) when end of life/palliative care became necessary, and moving her wasn’t feasible so the district nurses came in to look after her.

Yes indeed. I have donated to them monthly for about seven years now. They are amazing.

My advice may be relevant to the OP though as her local hospice charity may be able to help. And the hospice didn't actually fund my mum's care, the local authority did.

Plenty of nursing homes do offer palliative care, you need to ring around to find somewhere. Unfortunately whilst the nhs continuing care should pay, the burden is on you to find the place

I didn't have to find the place for my dad, we were offered it.

We had exactly this situation with my Mum (terminal bowel cancer, copd, mental health issues etc). She was 71. We ended up refusing discharge until they assessed her for NHS Continuing healthcare and she was offered a place at a complex needs nursing home - essentially a bit like a hospice but not an actual hospice as there were no spaces. Normal nursing homes wouldn’t take her. You will need to be very strong with them about refusing to have her discharged as it isn’t safe and tell them you cannot care for her yourselves as otherwise they will push for this. (My Mums place was fully funded by continuing healthcare despite owning her own home outright). People here often say is really hard to get it but we didn’t find that to be the case at all after the initial push for it.

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

Palliative care just means they are not treating to cure anymore, but just to keep the patient comfortable, and palliative patients can live for some time. Usually, a syringe driver does mean end of life is quite imminent though.
the hospital will have its own social worker and discharge team, who should be able to advise you although I know from experience with my own dad, that they can be really pushy. but they can't just discharge a patient without some kind of care in place...not only would that be heartless of them but the hospital will be penalised too! The words "unsafe discharge" can have quite a powerful effect! I expect they are hoping you and your siblings will agree to do the caring..stand firm if you cannot. I'm sorry, It's a horrible situation to be in OP, for both you and the patient. 💐

Plenty of homes can cope with palliative care but may only for a limited number of residents. If those places are already taken then they won't take any more.

Have you considered contacting a death doula? They may be able to help with ideas and practical solutions.

As an ex district nurse, do not be pushed into taking her home, despite the promises. The burden on the family is too high. Services are fragmented, communication can be poor and teams are often overwhelmed with visits. I would never choose to die at home.

Things may be different where you are , but here the District nursing team could look after the syringe driver daily ( and are around 24hrs a day, if there are any issues with it ) and see plenty of people in residential settings with syringe drivers , so she could be discharged to a residential home if there is a space available and the home is willing to accept her ?

It shouldn't be, but it can be a postcode lottery. As I say, the care my mum got at home could hardly have been better.

If you haven’t done already, I’d contact your local hospice and ask them what your options are. They may know of other solutions.

I’m really sorry you’re going through this.

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.

Not helped by home being in a rural location and my dad living with early stages of dementia still living at home. All the comings and goings unsettled him greatly.

Hospice care is what is needed. It need not be permanent. Hospices are very good at addressing a patient's needs to the point where they can be managed at home with proper care. They don't just do terminal care; they give expert input for management. People do go in and out - it is not all or nothing.

I've seen this argument too. What happened where I am in Scotland is the DNs refused to go in as they felt a nursing home offering palliative care should fund their own qualified nurses to look after the syringe driver. The DN service is really stretched and shouldn't be propping up the private sector. It does vary area to area

Absolutely agree it’s not what should happen but in some areas it’s a workaround for patients who otherwise would be stuck in hospital inappropriately. Sometimes our poor DNs do try to pushback on workload grounds but it tends to all go quiet again fairly soon afterwards.

I’ve visited patients in nursing homes where they say they can do drug rounds or (routine) blood tests for patients but not both, because they don’t have enough trained staff. The state of some private NH provision is appalling - an absolute racket.

This. Don’t blink first or allow a discharge home or most likely they will wash their hands of her

It may be a numbers thing. If they have a large number of residents in similar situations to your mother's, they may not be able to take on anymore people with such high needs.

My DM also has bowel cancer and other complex health needs. She has had a syringe driver since April which was managed by the district nurses at home until she went into a nursing home 2 months ago. It’s now managed by the nurses in the nursing home and they can top it up as necessary. She was initially funded by CHC fastrack but this has stopped and we going through social services assessment. I did have to find the nursing home myself.

A relative received end of life care in a care home, including syringe driver and top up medication when needed. So it's possible but as PP have said, might be a capacity issue - not enough trained staff maybe?

Are the hospital palliative care team involved? With a different relative, we found them very helpful.