Advice please re help to move my son nearer to family for rehabilitation

I am new on here so hi all. My son is 42 years old and has been in a hospital in the South of the country for the last 7 weeks. During the last 3 weeks we have been advised by the hospital that he needs rehabilitation now. There are 3 places that were mentioned to us but have been told they are no longer available, 2 weeks ago we were told his needs were a level 1 now today we have been told needs are now level 2. We have requested that a rehabilitation place be located if possible in the North where we his family live. But nobody seems to be listening to us. We have been given no direct contact name and number of the person co ordinating the move and are therefore speaking with all sorts of different people who all give us different information and ideas. I can’t understand why a request can’t be put forward by the hospital to move him to The Walton Centre now whilst he still has clinical needs to be met and from there moved to rehabilitation in the area. Could we request the move or is it internal politics and what NHS area pays the bill? Sorry if I’m waffling here I just feel so stressed and don’t know what we can do?

8 Replies

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  • cotton50 the only suggestion i can make is go speak to your local trust and see if they can meet his needs. good luck

    steve x welcome to the family

  • Please phone the Headway helpline on Monday morning m'love. Hopefully they can put you in touch with the right people for handling this crazy situation. Health issues are stressful enough without the complication of separation from loved ones............... for whom it's also a nightmare.

    I'd even be tempted to attend my local MP's surgery to see if he/she can have any input. This government needs to inject proper funding before the NHS reaches complete meltdown.

    The Headway number is 0808 800 2244--Mon - Fri / office hours. I really hope this will be resolved quickly ; it's plain you're reaching your wit's end. Good luck....

    Cat xx

  • I feel for you, please keep the pressure up. My partner had a TBI in August and has been from pillar to post whilst services make their mind up about where he can be. He still has not had the neuro rehab he needs and it is monumentally frustrating. Person centred care does not exist when it comes to cost and bill paying!

  • Because services are so few and far between, some patients are so sadly not given what they need. Talk to PALS at the hospital as well as they can help unravel what to do. Good luck x

  • If it helps Trafford General has a neuro rehab - ward 3. If you can get there contact details might be worth ringing neuro rehabs straight to see about their process. There are politics to it but they might know how. Don't know if Manchester is an option for you. The only other issues is that the wards are already full to the max due to the length of time and complexity of brain injury. I hope you get a speedy resolution. Be strong x

  • Sorry I have nothing to add to the replies already written, other than to give you my experiences.

    When I became ill and lapsed into a coma it was a Friday! Nothing other than basic care could be given til Monday, then I could not be moved across Manchester because it was considered life threatening for me, so most of my care was double checked by the consultants by phone with their colleague at Salford Royal where I should have been sent.

    There was no room on the neurorehab ward or strike ward for me. So I was treated on a general ward where I had good, not brilliant, care but they did all they could.

    When they had done all they could and I needed specialist rehab they kept me a further 3 weeks until a bed became available at the Floyd unit in Rochdale which is a specialist neurorehab unit. At that point I was moved there meaning it was quite difficult for visitors, my husband worked in Leeds and often could only manage a 20 min visit on his way home from work, but I hey would turn a blind eye when he arrived after visiting hours, so I made do with longer visits at weekend for the first two weeks, after that I was allowed home at weekends.

    The average stay there is 12-15 weeks and there are only about 20 beds so you can see it can be difficult for them to accommodate everyone, they have to make choices. Others were turned away for the bed I got, they are always work to full capacity.

    I’m sure you can make this work with persistence and patience. Do contact Headway they will point you in the right direction.

    Take care

    Janet x

  • Thank you so much for your replies and yes I will contact Headway again on Monday plus my MP and anybody else I can think of. I have tried not to become a nusiance at the hospital as I realise the staff are stretched but it seems it's the only way forward.

  • You have to fight for someone you love. Just remember medically they will know what's best for them and will have reasons for what they do. Open up the communication channels and see where you end up. Good luck and I hope they recover well x x

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