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New Member Jane


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Hi everyone. I am Jane and am typing this post whilst sitting beside my darling husband, Robin, as he sleeps in a Neuro Rehabilitation Unit following a massive SAH which happened at home in front of my very eyes on January 15th 2014.

He has had 3 instances of neurosurgery plus a tracheostomy, been through ICU, high dependency, neuro ward and then a gastric ward (yes, I couldn't believe that either!) before eventually securing a bed in neuro rehab where it is currently anticipated he will remain for at least the next 6 months as he currently has total right sided paralysis, is incontinent and has limited speech although thankfully his cognition does not appear to be at all impaired.

Whilst I am thrilled he was accepted on to the unit and is receiving therapies to help maximise his potential, I am less than pleased with some of the nursing care he is receiving which seems to be very "hit or miss" depending on which staff member is allocated to his care. Some staff are exceptional, others friendly but disinterested, one positively draconian! I am a former midwife and appreciate that, as such, I probably have very high expectations of care standards, based on the standards I personally delivered to those in my care. However, I am becoming increasingly frustrated that basic care issues, such as leaving the call buzzer within his reach, are simply not being met despite me pointing this out repeatedly.

I am also concerned that if I repeatedly raise such issues, I will be branded a nuisance and worry that my husband will suffer for this when I am not around. I also appreciate that none of these nursing issues are life-threatening but they do have an impact on his rehabilitation and ultimate recovery. How is he ever to become continent if he cannot reach a buzzer to alert staff that he needs the toilet?

Whilst I am eternally grateful he has survived and the desperate life-or-death scenarios are behind us, coping with these little irritations on top of everything else is becoming such a struggle. I am sure others on here will have experienced similar issues and I would welcome any insight you could provide. Many thanks.

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hi jane

welcome to btg and I pleased that hubby has come through such an event I have gone through the same with my lin and the care fell below standards and boy did I treat on some toes big time .and didn't worry about who I upset because I knew what was right and the matron I spoke to corrected most of it

like yourself im also ex NHS staff and with the knowledge I had realised thing weren't right. is this the treatment on the gastric ward or neuro?

don't bank on hubby being in hospital for that length of time. its still fairly early days as things go once his medical needs are met suggest to the dr hubby is referred to a rehab unit for further encouragement and phyiso to help get him on the road to having a better life im not sure which part of the country you are but it would be worth talking to the matron of that particular ward and put your concerns with a caviate that if things do not improve then take it higher to the chief executive good like I will send you a private message look top right hand side of the screen under notification good luck

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Hi Paul

I am referring to the nursing care Robin is currently receiving in the specialist Neuro Rehab Unit where he is a patient. The Physio, SALT and OT he is receiving all appear to be spot on at present but there is a distinct lack of communication between the therapists and nursing staff, despite lengthy MDT meetings every Monday morning.

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Hi Jane

Welcome and I am pleased to hear robin is in rehab after his epic battle since January. Early days still but hopefully things will steadily Improve.

Re the care , it is not an uncommon issue it seems. My early days in hospital when I was not part of the party so to speak required my MIL to step in an make it very clear on a number of occasions to the nursing team that certain things had to change, she is an retired director of nursing so you can imagine :shock:...then there were many many occasions where common sense and practical help and empathy just seem to have been left at home ...I was lucky that by the end of my stay I could help myself more but I still experienced some pretty awful moments ....tipped out of bed when on a bed pan and unable to move was just one of some shockers! Some nurses outstanding, I think of them with a smile now and will always remember them, the others, well let's just say they aren't in my happy thoughts.

You are robins greatest advocate and it's important you set certain standards that you make clear you expect to maintained in his care and that you you check these and so does everybody who is visiting ( put a list and notepad so they can ) and act swiftly if they are not, yes it may seem like an annoyance or interference but there will be a nurse or two on the ward who if they can get away with less they will and that's so hard when you can't ask for what you need.....they are not necessarily in the NHS for the same reasons you and Paul and others brought to it and compassion can be lacking.

The wards are very quick to realise when they have someone who has strong advocates and believe me it makes a HUGE difference to how you are cared for. Yes make 'friends' with the team but be clear ' woe betide anyone that doesn't look after my hubby '

Others will probably share some tips. Best book I read for carer point of view was Falling and Laughing by Grace Maxwell, she describes exactly what you have so sadly I don't think it's uncommon.

Best of luck. Best wishes to the chap, tell him to keep up the good work!

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Hi Jane,

I was like your husband also, intensive care was good so I am told (I was in cuckooland).

I had 2 nurses looking after me !!

Then 5 weeks I went to HDU, then onto a general ward where I got ventriculitis and Sepsis.

So I do understand what you are going through as my daughter and husband went through hell.

They did shifts as my husband did not trust some of the so called carers.

Keep well and if and when you need help there is always this site/BTG has helped my daughter no end.

It is somewhere to voice your concerns and ask for HELP !!

I wish you and Robin all the best and never give up, my sisters used to sing to me, it helped as they

said I told them "Wrong words"

Sing to Robin see if you get a response (Happy Song)

I was told I would not walk again, but up to a 100 yards before back goes on me, so keep positive xx

All the very best to you both xx

WinB143 xx

Edited by Winb143
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