Care package following hospital discharge

So sorry to hear that . It can be particularly complicated just but you might find the most informed people would be our helpline staff 0808 808 0000 . They would be able to give you a clearer more accurate picture and guide you towards the best form of intervention.

My friend has had to go into hospice for respite as the care was so thin on the ground until they can sort it out .

It is so stressful for all the family . In our area it is social services who assess the care plan and determine the need . 

You also might like to check out Marie Curie . They used to offer a few nights a week to allow the family some respite to do the other nights. Not sure if that’s still available but I think it’s the only charity that offers that type of invaluable practical support .

Hope you get some assistance,

Court 

Hi Harryby

Sorry to hear this, it is a very difficult time for all of you.

I supported a friend when he was discharged for palliative care.  It took about two weeks before we had the care plan running smoothly.  The problem is that there are various agencies involved.  But once we had everything in place it worked well.

Speak to their GP, he may be able to get things moving a little quicker.

The senior district nurse was so helpful to us, and through her we were able to get Marie Curie Night sits in place.  The service varies over different parts of the country and can only be accessed through the district nurse or GP.  We were allowed three nights a week, subject to availability, but it did help so much as I was able to get some sleep at night (which was much needed).  I didn’t sleep well the first night, once I knew my friend had been cared for well during the night, I was able to go to bed and sleep.

Hopefully they will have a pain management plan in place soon.

Have social services been in to talk through a care plan?  If not get in touch with them.  

I know that I had to do a lot of phoning here and there over the first few days and the one thing that I did that was so useful was to get a book and write down everyone’s name, contact details etc (including things like the local chemist who offered a delivery service) and this was always kept by the phone and if I was out whoever was there knew who to contact if there was a problem.

I would also suggest that you ring the Macmillan helpline, and ask to speak to a Benefits Advisor, as they will be able to tell you what benefits you might be able to claim to help with care.  Things do change when someone is on palliative care.  The number is 0808 88 00 00 and it is available from 8:00 am to 8:00 pm seven days a week.

I hope you manage to get things sorted soon.

Take care

VickiLynne

Thank you. I have contacted the helpline. They have also suggested Marie curie, but I’m not sure they are available in their area. I will speak to the palliative care nurse. The local hospice are coming out tomorrow to talk to my mother in law but not sure if that is to offer emotion support or otherwise. 

Hi again Harryby

The local hospice also came out to see my friend  to discuss with us where he would like to spend his last days.  He decided that he would like to go into the hospice and he was put on the waiting list.  With the hospice my friend went into we were told that if a place became available he had to decide there and then as  places were so much in demand and had he refused I’m not sure whether he would have been offered another place.

He decided on the Hospice because he lived alone and I was unable to be there all the time (usually four days a week) sand then it was down to his sister or his step daughter but they both worked full time, and there were periods in the day when he was alone.

When the care plan was fully in place it worked well and had he had someone living with him he may well have decided to stay at home.  The days passed quickly with everyone coming in and out and the carers and nurses were a great support to me too.  But I must stress how important the night sits were.

When he went into the hospice, I was able to go with him and stay a couple of days to settle him in.  He was well looked after and they supported  me too.

It is a very big decision to make, especially in this covid crisis we are going through as I understand visiting can be difficult, and your mum might not be allowed inside.  But this is something that they can discuss with whoever comes to see them tomorrow.

As mentioned in my previous post, you have to have a referral to Marie Curie but you might find that there are other cancer charities that you could access.  Contact your local Age UK as they might know what is available in your area.  Or if they have a cancer support centre in their area they might also be able to point them in the direction of other charities who can help with night sits.

This is such a difficult time for you and your family and I really hope that a good care package can be put in place very soon.

Take care

VickiLynne