Social care package - how long did it take to arrange, in your experience?

[werdkraft]

My mum is terminally ill (leukemia) and within just the last couple of weeks she has lost the strength in her legs, so can no longer walk. She has been in hospital since last week, for various interventions, but she was desperately unhappy there. They have now let her go home, but she needs carers to come in 3 times a day. The hospital nurses are arranging this, but won't commit to how long it might take. In the meantime I will stay with her (my home is 300 miles away). I'm hoping it will be days to arrange the care package rather than weeks. Am I being over optimistic?

You will get very varied responses. Sadly everyone's experience is different. It can be next day to weeks depending on level of availability of care and her needs.
Don't commit to say you can bridge because that eases the urgency for them to broker the care.

I think because you’re with her there is no urgency to the situation. I’d be tempted to explain that you can only stay till x date and she needs carers in place or returned to hospital.

Make sure you ask about continuing healthcare fast track - that is for those who are terminally ill and want to be at home (if that's what she wants). I believe the criteria is an expected prognosis of less than 6 weeks, but that can be really difficult to "diagnose" (for want of a better word). And ask for the palliative care team to be involved and see if they can speed up care - it's got more urgency if she's terminally ill and they may be more experienced with the fast track process.

It depends what is available in your area and who is specifically commissioned to provide fast track care at home, but it is often much faster than waiting for a normal social care package.

I hope your mum has her wishes met and you are also getting support

My experience as someone who needs care is social services deal with immediate crises only and as long as you’re saying you can cope short term sorting the care package gets bumped for someone a higher priority. You need to put a deadline it and be prepared for them to push you on it.

I am sorry to hear your news. A lot depends on the availability of the carers and of she requires single or double handed care. Unfortunately the 'no vac, no job' is now here, so there is potential for things to be even harder.

As others have said, be very firm that you moving in is very very short term. Will she have to pay for her care? With my MIL we were given the option of us arranging it ourselves or through SS - we did the latter, she had to pay the full cost.

Im so sorry your Mum is so ill.

When my mum was in the same situation, she wanted to leave the hospital to die at home but a care package was never organised. She was discharged home with her ‘GP aware’ which basically meant she was supposed to manage herself totally but her GP would make a home visit if asked. She had tubes, dressings, multiple meds, couldn’t wash or use the stairs. She couldn’t wear shoes or dress. But she was lucid and could use the toilet and stay on one level of the house so they said she was fine to manage herself. They gave her a commode and had her medication couriered but that was all she got for weeks. Several falls and emergency admissions, traumatic situations later, after several more hospital stays, and ambulances, she got a district nurse once a day after five weeks for a dressing change, but the full care package never materialised. They were basically waiting for her to die and the problem go away. When we tried to advocate for her they would offer a hospice place which was fine but she didn’t want to go there. She was given weeks and lived five months and never got the care that was promised.

I hope it is better for you and your Mum.

I had to tell the nurse I would stay until the care was sorted, or she wouldn't have got home. My mum texted me before the nurse called, to ask me to say we could cope - it's not like her to put her own needs above others' - far from it - which underlines how unhappy she was in hospital. She was getting so many interventions, and was so uncomfortable, that she wasn't able to sleep for the whole week. The social care will be free, when it comes, as she's terminally ill, and I think they're arranging a Macmillan nurse too.

You are 'bridging the gap'. There is therefore no urgency. The only way to get her carers is to say you can no longer bridge the gap unfortunately.

Carers are in short supply. Local authority rates are low. It's going to take a while.

Even agency and private arrangements (paying much more) are taking a long time to fill vacancies at the moment.

I'm sorry for your situation.

So sorry to hear you’re in this situation. I’m my experience it takes months rather than days. Is there anyone else who you could ask- Macmillan Nurses or palliative team might be able to swing something in your favour?

It was within 48 hours, but based on us refusing to do any care and I believe the hospital were desperate for the bed so spent a lot of time chasing it up, I would give them a set date and say you are leaving them they will have to arrange for that date and stay firm.

Sorry to hear.aboit your mum.
It will be quite a while I'm afraid due to the covid no jab no job now. Carers even ones who have had the jab have left social care including myself. I really hope you get the care for your mother. It makes.makes.me.sad what's happening in social care but with bad pay and bad working conditions things have to change to people who need the care get the best care they deserve

Does she have a social worker? I would ask for the details.

Different situation as person not terminally ill, but it was only when the spouse got rather angry on the phone was some extra care offered.

Depends on the funding stream but it's highly likely that if it's the nursing team that are arranging it then your mum will be going home under either continuing healthcare arrangements or Discharge to Assess arrangements.

Both pathways are much quicker than traditional social services routes (I say traditional because discharge to assess is becoming the standard discharge process in most areas).

CHC packages are quicker because the funding is better than LA and Discharge to Assess pathways are quicker because there's usually a dedicated short term care team or agency that exists just to support rapid hospital discharges and buy breathing space until a permanent agency can be found.

You tell them how long you can bridge for and they will work to your timescales.

The social care will be free, when it comes, as she's terminally ill, and I think they're arranging a Macmillan nurse too

Social care is not charged according to need its charged according to ability to pay.

If you have been told she will not have to pay for care because she is terminally ill then she won't be in receipt of social care she will be getting NHS funded care (referred to as continuing healthcare /CHC).

These distinctions are important and can massively change what can be funded in what timescales.

My worry is that since she's now home and you're looking after her, you are effectively out of sight and out of mind and you're on your own now. You should never have agreed to her coming out until a care package was in place I'm afraid. There are hardly any carers available at the moment. Well certainly in my area. (South coast)
Just been through similar with my DF who went downhill very rapidly, died 12 days after his pancreatic cancer diagnosis. Couldn't get carers, couldn't get him in a nursing home. I was very lucky the hospice had a bed and took him in 2 days before he died. They were absolutely wonderful.

I think you need to speak to your DM's GP surgery.

She isn't out of sight or mind because she needs to go back to the haematology unit twice a week (via hospital transport) for tests, tranfusions etc. It is possible that they will re-admit her.

They didn't say what pathway she was discharged under but I'll try to find out.

There is a desperate shortage of carers in many regions ,

many people are getting trapped in hospital or getting trapped as unofficial carers.

It's in the papers almost every day

As long as you are providing care they won’t rush. In fact they’re probably not even looking in my experience.
You need to be firm on when you are leaving, and I’d be telling them you’re leaving a week before you actually are, to ensure care is in place.

Fully aware of news headlines, but they focus on negatives. I'm looking for lived experiences.

Have confirmed she's on the "continuing healthcare" pathway. She has less than 6 moths to live.

They won't do anything while you are there. They trick family members into being carers in this way and then trap them until death. Sorry. The only way to get care is to completely refuse to do any of it.

If she is on CHC then it should makes things slightly smoother.

Plus they won't only be relying on domiciliary care agencies like the local authority they will be able to make use of Macmillan / Hospice at home, district nursing teams etc. The CCGs also usually have more freedom to use agencies that the local authority don't routinely use.

If a care provider has a choice between a CHC funded package and a local authority funded package they will most likely take the CHC funded package because the rates are better and there is less red tape.

There ARE significant care pressures at the moment but it doesn't mean that there isn't care still available.

@lomoloko

They won't do anything while you are there. They trick family members into being carers in this way and then trap them until death. Sorry. The only way to get care is to completely refuse to do any of it.

I appreciate that some people have bad experiences of social care (which is on its knees)

But this lady is in receipt of CHC and is on a NHS/health funded pathway and things work very differently.

It's probably not helpful to apply experiences of what happened with Social Care funded packages when it's a NHS funded package of care.

Social workers are under pressure to only meet assessed needs and apply budgets appropriately, encourage people to remain as independent as possible and look to see what family etc can do.

The NHS funded packages are completely different and whatever care is felt to be needed by the nurse assessor to make someone comfortable and safe will usually be put in no questions asked.

As she is under palliative care, speak to the hospice at home service that covers her area. It's going to vary between areas, but ours can arrange interim cover within 24 hours.

Also ask the hospital to authorise visits 4 times a day. It will seem like too much at first, but the carers won't mind if you don't need them every time. As your mum's condition progresses, she'll need help with positioning, for comfort but also to minimise the risk of bed sores. Better to have maximum care in place, than struggle with too little.

Our care was arranged within three days, with an agency that specialises in palliative care. Continuity of care is really important, people that will get to know your mum and build up trust and confidence.