"Care package arrangements for discharge of terminally ill patient"

About: Crosshouse Hospital / General Medicine

(as a relative),

My mother was admitted to Crosshouse Hospital recently with terminal cancer.

My mother was first admitted to Ward 3E where I cannot praise the staff enough. The nurses were constantly on the go but nothing was too much trouble for them, they kept us updated at every visit and arranged an appointment for us with her Consultant to discuss matters.

She was moved to Ward 4E after 4 days and then to Ward 2A. I have no complaints as to the care my mother has received from the medical staff dealing with her as she is happy with the staff and is comfortable. We have been told that my mother can now be discharged and that a full care package would be put in place to help her at home.

Unfortunately this is where things have started to fall apart. My sister and I have spoken to numerous people (different person every time! ! ) including Ward Staff, Occupational Therapist and Intermediate Care team. It would appear that these teams are unable to communicate with each other as no matter who we speak to they always tell us that we have to contact someone else.

We were told someone would take my mother home and assess her in her home environment but that’s not happened. We have great concerns as to her safety at home as her bathroom is upstairs and she has told us she won’t use a commode which is what is on offer. We want her to come home as she doesn't want to die in hospital, however she has admitted to us that she is afraid of being sent home on her own and unsure how she will cope.

We have been in contact with the Hospice and they are happy to assess her but require a referral. Her breast care team had referred her previously, for day classes, but they are unable to refer her this time as she is an inpatient.

We asked the staff on the ward on a number of occasions for this to be done and were told it was in her notes and the doctor would do this. Recently we were told they are unable to do this until she was discharged.

As a result of the above I spoke with the Intermediate Care Team recently and asked if everybody could get together to have a discharge planning meeting where her family could ask questions and raise concerns and the relevant people would be on hand to answer and give advice, they advised me that I had to speak with the ward staff to set this up!

I telephoned the ward and asked to speak with a senior member of staff. There was none available so I spoke with a member of staff who is caring for my mother, but they did everything in their power to dissuade me from taking this route from telling me that there was a lot of paperwork involved to asking if I was sure I wanted to do this as relatives often found this a daunting experience being in the same room as all the medical professionals and quite often couldn't remember everything they wanted to ask, they did suggest that I make a list of questions. I am extremely insulted that it is deemed that I would find a meeting with the medical team to be daunting as I would be extremely grateful to be able to speak to everyone involved to understand what is in place and how care will be managed.

I have been advised by the staff nurse that a social worker has been contacted but it could take up to a week to arrange this meeting. I appreciate the hospital want her bed, as we have been told on many occasions that she can be discharged as “they need the bed”. However first and foremost we need to know that my mother will be safe in her home environment and I feel that this has been lost along the way.

We have no idea when a carer will call or even what they will do for her. We just want my mother to be treated with dignity and respect as she enters the final stages of her life, however this is sadly lacking and the stress that we are now experiencing is unjustified.

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Responses

Response from Fiona McQueen, Nurse Director, Nurse Directorate, NHS Ayrshire and Arran

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Dear FrustratedRelative,

I was so disappointed to read your posting about what's been happening to your mother. I'm pleased the clinical care that has been delivered is good. However the lack of coordination of your mother's discharge, and you and your sister being passed from pillar to post is unacceptable.

I'm really diasppointed that you weren't met with a positive response about your attendance at a discharge planning meeting. I believe that the people who know best how someone will manage at home, is the person themselves and their family. So family being present at a multi disciplinary meeting, in my mind, is incredibly helpful.

it may be that you have resolved the issues by now, however, if you e-mail my PA Kate, she will make sure the right people are contacted to make arrangements for your mum's discharge. Kate can be contacted at kate.macdonald@aapct.scot.nhs.uk. (tel 01292 513607)

I hope your mum's discharge does go smoothly and she gets settled in her home again.

best wishes

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Response from Eunice Goodwin, Patient Feedback Manager for NHS Ayrshire and Arran, Quality Improvement and Governance Team, NHS Ayrshire and Arran

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Dear Frustratedrelative,

Thank you so much for using Patient Opinion and getting in touch off-line to highlight your plight. One of the main issues here seems to be a relatively frequent complaint, poor or patchy communication. This is not only disappointing but it increases the stress at an already stressful and difficult time. I am sorry you found yourself so frustrated and very sorry for the part we played in that.

As you know, we have spoken a few times now and we have made a great deal of progress understanding what has been arranged for your Mum’s discharge to home, which will take place this afternoon. The referral to the hospice team has now been made, the referral to the Integrated Care and Emergency Services (ICES) team was made, the ICES team arranged the appropriate home care due to start this evening and a first exploratory visit with a member of the team will take place tomorrow. I believe you are more content because you now have the confidence that the right things will be in place for your mothers comfort and safety on her return home. That is what all of us would want for our loved ones under the same circumstances.

I will forward this to the senior managers for their consideration and if you feel you would like to discuss this with anyone at a later point, I would be happy to arrange that. Please feel free to contact me, you have my details.

I do hope your mum now feels the dignity and respect you rightly wanted for her and all goes well with your Mum’s discharge and future care.

Kind regards,

Eunice

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