My partner has had a stroke and they want to move him to a hospital quite a bit further away from our home. Is there anything we can do to stop this?

[AcrylicPlexiglass]

Hi everyone. My wonderful partner had a massive stroke a week ago. He is now out of the high dependency unit but currently severely disabled and will need intensive long-term inpatient rehabilitation, almost certainly for many months. It has been a torrid time and one of my few unequivocally positive thoughts has been that we are lucky he is in a hospital that is very easy for us to get to so that we are all able to see him frequently and will be able to continue doing so during the long recovery process. We have a 4 year old and 2 teenage boys, no car (and I don't drive), I usually work full time, etc and frankly the thought of getting to a hospital 2 bus rides away minimum with a walk at either end and in between is making everything seem even more daunting. Our trip to the current hospital takes about 5 minutes on the train and is also very close to my office and on the trainline from both my boys' schools.

The move is not being planned for clinical care reasons (if it was obviously we would just accept the decision without question) but because there is some kind of London stroke pathways agreement (We are in London, btw) and our postcode says that he should go to this particular hospital, even though it is considerably further away and out of borough and the same care (possibly slightly better even as it is a centre of excellence for stroke) is available right where he is. Additionally he is under the heart failure team in this current hospital (heart failure caused the stroke) and they have been visiting him regularly on the ward.

The ward manager seemed more than a little pissed off when I was not in agreement with the plan as he had rung to TELL me that he was being moved today and was not expecting me to object. As there is no PALS service running at weekends they have agreed to keep him in over the weekend and I will have a meeting with his consultant on Monday morning and can access PALS afterwards if the outcome remains that they are insisting on him being transferred. Does anyone have any advice? Does he/do we have any rights to choose where he is treated? If not is there any discretion for them to allow him to stay where he is and would our situation be likely to meet the discretionary threshold, iyswim? Is there anyone I can approach for help/to advocate for us?

Many thanks for any advice.

[BetsyBoop]

I would check if your DP is covered by what is in the NHS Choice Framework

[holidaysarenice]

Its a difficult one. Is the care better where he is going?

I hate this to sound blunt but have you an idea of his expected outcomes? What sort of function they think is possible etc?

If he's on an acute stroke ward then no he can't stay there if its a rehab bed he needs, but it doesn't necessarily need to be x miles away.

Tbh the most important thing is that he's in the right setting and not how close you are. Is there a closer similar type setting to where they are proposing? If so, then I'm sure you can have him transferred there. Consultants are usually lovely and very helpful. Bed managers are a different fish.

Also are you on a low income/entitled to travel subsidy?

Some of the stroke charities are fantastic helps and can often find lifts/money/assistance of many sorts.

Many kind thoughts your way.

[DPotter]

Sadly for you, I think you need to prepare to be told your DP has to be transferred. As citizens of the UK we have the right to be treated by the NHS but not necessarily where or by whom we choose. Pathways & contracts are agreed by regional health authorities (I know the names have changed but can't remember to what) so staff in hospitals have very little discretion. Your DP's consultant will have to ask permission of the health authority for DP to stay where he is and the answer may be he has to go to the Pathway hospital. Frankly I think you've been lucky that your DP has been allowed to stay the weekend.
You could take another tack and ask for support in travelling to the other hospital - not ideal I know.
Best of luck

[BuildUpMyFence]

Ignore the charity that is giving the links, look at the links for your rights.

here

[AcrylicPlexiglass]

Thanks for the advice, everyone, and the links, Buildupmyfence and BetsyBoop.

I'm not sure about expected outcomes, holidaysarenice but he definitely needs a rehab bed. They have intensive rehab at the current hospital, which is far and away our nearest and offers the care he needs, so I think he is in the right setting, iyswim. The care is not different, better or worse at the other hospital afaik- just further away, difficult to get to and not in our borough.

[AcrylicPlexiglass]

Do you think it would be worth asking our GP to advocate on our behalf?

[BuildUpMyFence]

I think the way the NHS is run now a days you have to look at their guidelines and work you way forward from them. If you go in Monday morning knowing their policy then you have a better chance. For a bit of effort the weekend educating yourself, you can save yourself a lot of travelling in the long term.

[jonicomelately]

Hello AcrylicPlexiglass I have no advice for you further to that you've already been given but I really sympathise with you. I'm sending you a pm so look out for it.

[maxpower]

If this is a commissioned service (which is what your description sounds like) it's the ccg who has the power in this situation. Fwiw there will be an executive on call within the hospital over the weekend so you can ask to speak to them. I'm afraid pals won't have the authority to keep your dp in the current hospital. If the current hospital is the acute one they will need to free up their stroke beds quite quickly to make space for the next patients.

[roadwalker]

I work in a rehab unit
The beds are paid for by GP commissioners
We had a patient who had a rehab unit 5 minutes from him but his GP did not fund beds there so he came to our unit which was 35 miles away
Is it down to which GP you have? If so there will be nothing you can do about it- the system stinks
Some beds are GP funded, some are by locality

[AcrylicPlexiglass]

Thanks, Joni. Will look out for your pm. Thanks buildup. Am having a good look at the charter/choice stuff but having trouble working out what applies in our situation. Eg can see that people are allowed to choose their consultant etc but this seems to be more for planned admissions and done via go.

Hi maxpower. What is the ccg, please? I do quite see that they need to free up the acute beds and goodness knows I would not want to block the next poor person who needs an acute bed from getting the care they need. however, the hospital he is in, which is as I say our nearest by some way, does also have rehab beds and he has already started a rehab programme there. I am quite baffled as to why our postcode sends us "out of area" as it were. Clinically I think there is an argument for him staying where his heart team is but apart from that this is all about our chances of being able to offer him and ourselves the best possible support.

[AcrylicPlexiglass]

Hi roadwalker. Sorry, xpost. Thank you so much for doing an amazing job. So impressed with the rehab staff where my partner is now. I work in mental health but had little knowledge of stroke before this happened (still don't but trying to learn more) and I am in awe of how ace the vast vast majority of the staff are. I'm not sure if it's a GP thing, though it's possible. Think max could be right about it being commissioned though as there is a London Stroke pathways website thing where you type in your postcode and it tells you which rehab unit you're supposed to attend. I really have no clue why our postcode brings up a non-local hospital. Must just be an unlucky quirk of the system I guess, a bit like school catchments?

[roadwalker]

The ccg is the commissioning group
I hope your dp has a good outcome, progress can be slow but outcomes can be good

[holidaysarenice]

Is there a rehab bed available in your hospital first off? And secondly it may not be for the outcome they expect for him, eg it could be for full function or not.

Speak to the consultant, discuss the aspects your worried about. If he can help I'm sure they will.

Have you checked the stroke pathway for any other addresses nearby, cud it be wrong?

Consultants hate shit like that, they like the best care for the patient so if its the right type of bed etc, it is possible.