""Care Package" - what a joke!"

About: Beacon Healthcare Centre Southampton General Hospital / Neurology

(as a relative),

My husband came into Southampton General Monday just gone on the Stanley Greaves Neuro ward.

First complaint he has Parkinsons and has "small accidents" all of his trousers both day wear and night time were put into one of your plastic bags and left by his bed, his corner of the ward smelt of Urine because nobody had tied the bag top for him. He cannot do this as his fine motor skills do not allow. He is not yet 50 and I don't have that smell in our home because it's horrible and for the lack of a few minutes doing up a bag top. He felt mortified and it was left on top of his bag of clean clothes. I had to travel from the Isle of Wight to see him and, having just finished my 5th knee replacement, hauling washing backwards and forwards is not part of my getting well brief.

The most important complaint and one I have been told to execute by a member of the Apo-morph team is this: my husband was told he could go at a specific time and when I went over 2 and a half hours later, he was still waiting for his Apo-morph to come up from pharmacy, three hours more after this we were both a tad tired of the "still here then?" comments. We went to find a SHO who informed us it was a niche drug and took time to get up 2 levels of landings. Niche it may well be but your hospital knew my husband would be needing it upon his discharge and was already packaged to go, I think 5 hours is unacceptable for somebody with Parkinson's to wait, then to get a taxi, then a ferry and a taxi the other side and being affected by Parkinsons!

Then when we took off his pum, I went to pack his blue suitcase with his Tuesdays does and, hello hello, we had the Apo morph, we had the little plugs, we had the plastic hypo's but we did not have the push needle and fluid line to connect my husband to the pump. I phoned the ward to be told"well we can't exactly put it in a taxi to you can we"? This was the wrong answer I felt and then they were no help at all.

I phoned the Apo morph line who were brill and would help in the morning, but to late for my husband's plug in time. I phoned our good old Beacon on the Island and spoke to a "wonderful district nurse" who knew nothing about the pump, went and looked it all up, chased down 2 lines for my husband from Pead's to see him only and came out way after midnight in the morning to drop them off.

Once again Isle of Wight NHS trumps Southampton care. That said, Alex one of the wonderful Apo morph team who came over yesterday morning with four boxes of the needles. We were appalled at what had gone on want to complain as I think it is disgusting. Also, as for the Parkinsons Co-ordinator being trained from your hospital for the Island who is meant to be "in the loop" as part of the "care package", they were emailed marked as urgent Monday eve and Tuesday morning still awaiting any sort of reply and a message was left for them at Laidlaw Unit where they are based and no reply. So my husband would really have been in dire straits had we relied on the "care package" that was sorted out. And staff wonder why partners and carers don't like their partners or loved ones going into hospital. I may only get 60p a day in reality for 24/7 care for my husband but damn sure he would not have been allowed to leave a ward with the basic bit of his pump "the needles" and yes come later this year I will be raising his care with Ms Manson.

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Response from Vanessa Flower, Patient Experience Lead, Isle of Wight NHS Trust

picture of Vanessa Flower

Dear niniferene

I was really sorry to read about the poor experience that you and your husband recently had.

I was however, pleased that our District Nurse was able to support you when you required help out of hours and I will share this positive feedback with the team providing this service.

Whilst I cannot comment on the services provided by Southampton General, whom I am sure will respond separately. I would welcome the opportunity to further explore the issues that you had with the Parkinsons Co-ordinator at Laidlaw, and if you would like to discuss this in more detail, please contact the PALs team on 01983 534850.

Thank you for taking time to post this valuable feedback.

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Response from Vanessa Flower, Patient Experience Lead, Isle of Wight NHS Trust We are preparing to make a change

picture of Vanessa Flower

Dear niniferene

I just wanted to update you following your feedback, whilst I am not able to comment on your issues with Southampton General Hospital, I have discussed your issue with our Parkinson's Disease Co-Ordinator, who is going to look into how we can hold some supplies centrally for our Island patients using the pumps.

This will enable patients and their relatives / carers to have easier access to these in an emergency situation regardless of what time of day it is.

I will obviously update further when we have agreed and actioned this fully.

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Update posted by niniferene (a relative)

Many thanks for taking the time to reply and trying to sort out something for pump users - that's fab!

We would like to thank the on call district nurse, we think his name was John. In all the fuss we didn't quite catch it but he did go above and beyond in turning out at 2am in the morning and faith in human nature was restored.

However once again the Parkinson's care side has let itself down, which begs me to ask the question "do you wonder why we go it alone 99% of the time"?

Many thanks for all your help.