Hi Cripper,

I'm sorry you are going through this terrible mismanagement over your mum's care. It really seems that the hospital has let your mum down as this is what should have happened - just before your mum was discharged with a terminal diagnosis the hospital social worker should have seen her and put into place the social care plan for her 'care needs' ie. any carers viisiting daily to help your mum with her personal needs (toilet, washing, dressing etc) and any aid implements provided ie. walking frame, hospital bed etc. This is the part that requires a financial assessment to see if your mum has to pay towards the care visits but I think terminal patients may not have to pay (Macmillan can answer that for you and that's the care plan they have referred to). The second thing that should have happened is that the hospital should inform your mum's GP of her discharge & the medical care she will need. The GP should arrange with the district nurses for a medical care plan to be made so palliative care can be given - sometimes this may also include help from the local hospice. The medical care plan is free.

It seems the hospital hasn't informed their social worker and they either haven't given the GP the correct medical care details or the GP is at fault not arranging your mum's palliative care. I would suggest, re her social care, that you contact the hospital's social worker & ask if they ever saw your mum & what the outcome was (perhaps your mum has forgotten). If she saw them & she said she didn't need social care at home you will now need to arrange it with your local Adult Social Services. If they never saw her (perhaps the ward mistakently didn't contact them) you need to ask them what you should do now as she needs social care. You then should ring your mum's consultant's secretary at the hospital & explain that she has been discharged home with a terminal prognosis but no palliative care has been arranged and her GP knows nothing about it so hasn't arranged any care. 

Until you get the problem sorted at the source - the hospital - you will be going around in circles with Social Services and the GP. I hope you get things sorted quickly - emphasise the stress this is putting on your mum & the family at a time when every day is precious. Good luck & let us know how you get on,

Angie

I am updating this to help anyone who may have to deal similar problems.

A few days after I posted this in Nov 2018 Mum went completely unresponsive when we were helping her get to the toilet.  Sort of like fainting but I thought she was maybe having a stroke so called 111 and the ambulance came and they helped to move her back to bed where she recovered.  A day later she fell out of bed and was again unresponsive and as we had to told not to try and move her ourselves we had to get another ambulance.  This seemed to make the gp agree to come and visit her and a few days later the district nurse came and took blood tests.  It turned out mum was anemic and that was causing her to faint and become unresponsive when she was trying to stand.  Mum had two blood transfusions in hospital.  On the first trip she passed out and fell onto the floor of the ambulance.

After this treatment mum slowly improved.   She had a number of home visits from the GP and one visit from the  Macmillan nurse.   A care plan was put in place and we were sent some items like a wheel chair andacouple of commodes.  During this period I fell out with my brother in law who became unhappy with my sister helping to look after mum. He told me that he was going to take charge of the situation. from me and my sister and get her moved into a nursing home.  That did not happen and by mid January Mum was basically a bit weak but able to look after herself.  Gradual improvement continued through the Summer/Autumn.  She had periodic visits from the district nurse to check on her and one visit to hospital because they were doing a study on how well the stint that she had had fitted worked out

When you see someone every day it's difficult to see subtle deterioration.   Mid December 2019  mum felt very cold after a ride out and she had to go to bed in the afternoon.  A day later she got up and had a bath was going out but felt too tired and went back to bed.  That  night she fell out of bed and was again unresponsive on the floor and we got an ambulance.  Once back in bed she rallied.  We then had visits from the GP and district nurse to take blood tests.   We then had another visit from a different gp who said she had an infection and needed antibiotics.  Gradually mums condition deteriorated and she became completely bed ridden and increasingly incontinent with no appetite.  The Christmas holidays did delay getting additional help with mum.  She had the option to go into hospital but did not want to do that.  There was a bit of buck passing between the district nurse and the gp with each saying the other should be doing something.  Basically all of the medical professionals individually were doing their best but nobody seemed to be in charge.  Early in the New year the Macmillan nurse visited again and decided mum needed a proper hospital type bed a other equipment. The slippery sheets for moving her position on the bed were particularly useful but it would have helped a lot if we had had these items before the holidays

Mum became unable to sleep and very restless. We had to call the district nurse out of hours and mum got an injection ato calm her down.  After this we a had a comparative frenzy help.  With calls and visits every day.  Mum was only lucid for short periods alternating between  being hot and cold.  It became difficult for her to clear her mouth and she had a catheter fitted.  Mum passed away a few days ago.  She wanted to stop at home and generally it was less upsetting having her die at home than when my father died in hospital and I had to take mum to hospital to speak to the doctors and collect his possessions.  Obviously if I had to look after another relative with this experience it would be easier but with hindsight  a bit of prior training moving someone around and back onto the bed and dealing with incontinence would have been very beneficial

Hi Cripper2,

I'm so sorry for your loss and the circumstances that led up to it. It seems that there was no cohesion between the different care providers and your mum should have had better welfare treatment in her remaining weeks. At the end though, your mum was in her own home and with her family so you are to be congratulated in the care you provided her, against all the odds. Thank you for posting your experience, I'm sure it will help other carers not to give up and to fight for the care that is available but isn't widely advertised. Take care and may your mum now be at peace,

Angie