How to arrange transfer of a relative to a hospice - any advice?

[sciurus]

My family member is currently in hospital. We have been given a life span of 4-8 weeks. She's in a hospital ward but there is nothing that the hospital can do now. She is fairly alert - reading etc, so well able to make use of the facilities provided by a hospice. Taking her home is an issue as her illness was so sudden and she has no mobility, so our homes just aren't adapted to her needs (bathing, stairs etc). She's fine with the idea of being in a hospice and is absolutely desperate to be off the hospital ward.

The hospital are not being helpful with regards to how to arrange transferring her to a hospice. They have cancelled one meeting already which was supposed to address this and no-one from the palliative care team has seen her. The doctor just seemed preoccupied with funding - do they have to fund it?

They have said they will arrange another meeting but we have no date.

What can we do?

Oh op, what a sad situation

Can you contact the hospice directly and find out exactly what they need for referral? I imagine if she is in hospital, she will need to be referred by them but it won't do any harm to ask, then you have all the info you need to pester hospital?

Also ask the hospice staff, if you were to have her discharged home to you, would a gp be able to refer her in?

Thanks for your reply. I have been making some phone calls and have found out that because she's in the hospital, then they must arrange the transfer. I also phoned PALS who were very helpful and explained that the hospice place isn't funded by the hospital, so I'm not sure why that was mentioned by the Dr.

Contacting the hospice directly is an excellent idea though - thanks for that.
I wondered about asking for her to be discharged directly to her home as well - something to ask about if PALS can't get things moving quickly.

The hospice should be able to advise-the one we used had good links with the hospital so they liaised quite well. All will depend on whether a local hospice has a place, but even if they don't you do need to get on a waiting list.

Also, it is really worth going to visit local hospices to see what your options are. There were two available to us and one very much nicer and better set up than the other.

Good luck with it. It is a bad enough situation without having to struggle against uncaring bureaucracy.

Oh OP, I'm sorry you've all been put in this situation. The hospital should be communicating with you properly about this. It must be very upsetting for you all.

It may be that your relative hasn't been referred to the Palliative Care services in the hospital- this doesn't automatically happen. Often a patient must have specific needs such as symptom control needs or be in need of other support that can only be provided by specialist services.

Unfortunately hospice places are often in high demand and reserved for those with difficult physical symptoms or those who are in need of higher levels of emotional or psychological support. It may be that your relative fulfills these criteria but it may be that hospice isn't an option.

The Palliative Care team in the hospital is the right place to start though.
If your relative wants to go home then the hospital need to complete a form informing social services of her life expectancy and they can usually get things moving very quickly including getting hold of all the equipment you might need.

This has taken me ages to type as I've got a toddler climbing on me. I've likely cross posted with a lot of people!

I'm really sorry that no one is communicating with you properly about this

Thanks that's really useful advise. Thank you.

Me again, just wanted to say that, if she's got a cancer diagnosis, the Macmillan helpline can be helpful.
Even if she doesn't go to the hospice, the community Palliative Care Team should still be able to visit and support you at home (if that's what she wants) district nurses will also be involved and services like night sitters can be available (eg through Marie Curie). It wouldn't be unusual to have visits several times per day.
The hospice still could be an option though- push for that Palliative Care referral. The sudden and unexpected diagnosis alone should be grounds enough for that actually, even if she hasn't got other complex needs
Hope it all goes ok

Thank you so much for your help.
Palliative care phoned earlier today and they were really helpful. Apparently they had seen her on the ward already but we weren't aware. They seemed in agreement that a hospice would be the best place to meet her needs. Hopefully things will start moving for her now.

I'm so sorry about your Dad.

I just expected the care to be 'there' but it seems it's just not. It makes me feel very sad for people who don't have family members to fight their corner for them in this position.

Glad things are looking a bit more positive about the hospice sciurus. Palliative Care is really variable across the country. Most of it is, at least partly, funded by charity. It is such a pity that the NHS struggles so much with end of life care.