Hello husband had a massive stroke.. Anyone else g... - Headway

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Hello husband had a massive stroke.. Anyone else going though the same. Just like to know what after hospital care did you receive if any y

teresa12 profile image
8 Replies

My husband been home since April lost feeling on left side. He did get occupational therapy for couple of weeks than nothing since May can't get pips can't get physio for him he went for build up shoe but no follow up physio wonder if anyone going though the same

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teresa12 profile image
teresa12
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philcollis profile image
philcollis

Hi, I think that you should have a discharge plan? The plan should cover what is needed to continue recovery including any rehabilitation therapy that may be required in the community? If you think that you are not receiving enough therapy support then I would talk to Stroke Doctor/Secretary to discuss why therapy isn't happening and also any other issues that you are encountering - it may be a good idea to make a list of the concerns/issues you are having. I am presuming the 'shoe raise' is to address 'drop foot'? An assessment and discussion should have taken place around what might work best? There are lots of orthotic options and these should be discussed with therapists? I would also include on the list any 'personal care' issues - dressing, washing, feeding, toileting etc. Stroke recovery is challenging enough for an individual /carer/family. I would suggest talking to /looking for advice from charities i.e. British Heart Foundation, Stroke Association, local Stroke support groups, and check out 'Stroke related' social media groups i.e. 'drop foot' facebook group etc. Talk with other Stroke survivors/carers about their 'lived experiences' - can provide useful and informative, practical advice going forward. Stroke recovery is a constant battle but 'giving up is never an option' - good luck ;-)

Pairofboots profile image
Pairofboots

I would agree with everything that phil said. The current pressures on service could possibly account for the lack of ongoing support, but this no excuse for not receiving support.

I would suggest contacting the Headway helpline, contact details are pinned to this page. They are not easy to get hold of at the moment, like many services, the current situation has repercussions, but well worth persisting.

Re PIP, while your husband is an inpatient, then no you can't claim, but as of the first day of discharge he will be entitled. So as soon as you know the date, start the application, as this can take a fair time to process.

You may be able to claim Employment Support Allowance (ESA). This is means tested, and sick pay received effects payments. If self employed then this should available. This, I think is available even if inpatient. But like any benefit, it takes time to process, so as soon as you can apply, do so.

ESA is a 'gateway' benefit, therefore if entitled then there are other benefits that apply. Carers Allowance is one of these, and is payable to you.

Headway can help you through the maze of the benefits system.

Best wishes to you and your husband 🍀

cat3 profile image
cat3

Hi Teresa. I don't understand why your husband has no care plan, especially follow-up physio. If he was discharged into the care of his GP, the GP should refer him for any follow-up therapy or treatment.

Please phone the Headway helpline on freephone 0808 800 2244 tomorrow (office hours) and talk with them about your man's needs, and for information on PIP ; they can help.

Let us know how you get on after speaking with Headway... Best wishes, Cat x

teresa12 profile image
teresa12 in reply to cat3

Hi cat3 when he came home end of April he had a social worker but honestly we didn't get any other care or physio after as for our local gp total joke it all phone calls to scared to see anyone it all covid they blamed lack of care onWe only seen district nurse once back in May

We haven't got ramp I had to find a company that hire them out so at least he we can get him. Out I will ring headway office tomorrow for some advice

Thank you for your reply

cat3 profile image
cat3 in reply to teresa12

Good girl Teresa ; stay in touch. x

AlmaMatters profile image
AlmaMatters

Hi Teresa what you are describing as your husband’s follow up plan sounds very similar to what I got and that was nearly 11 years ago. I’d imagine it’s even worse now with the added pressures on the nhs. However personally I don’t think that’s a relevant reason (or excuse). As I said, it was the same for me years ago.

The sad fact is there’s simply no after care in place for many patients once they’re out of rehab and unfortunately many of us are just left to our own devices. I ended up paying privately for physio but financially I couldn’t keep it up for long and could only afford it for a few months. It was £80/hour back then! In the end I had to just get on with things as best I could without any help. I hope the situation can improve for you. It really is sad that so many patients are just left like this.

Fitzhugh profile image
Fitzhugh

Hi , I know exactly what you are going through. My husband also came out of hospital in March this year after a two and a half month stay. I also had to fight tooth and nail for any information, support plan etc. Occupational Health were ok as a start, but had no further input after discharge. AS far as physio was concerned, I was told by the hospital to contact the GP. The GP said no it was up to the hospital. Eventually after about 5 weeks of persistance I got regular physio. It is beginning to wind down now but I have a better idea of how to help him now. I found my local Carers group a mine of information and help.It continues to be a long haul but I am much calmer now and more in control. The only way to get ahead is to be a thorn in their side, but gently of course. There is no point in putting their backs up. A little desperation doesn't do any harm either,

Pairofboots profile image
Pairofboots

Just remembered Teresa, maybe not the nicest of wording, but another thing you can apply for is, Severe Mental Impairment. This will give you a discount on your council tax. You ask for a form from your council, your GP signs it to say in their opinion that either your husband does or doesn't live with SMI as defined by the Housing Act. As a couple this would give 25% discount from the date of injury. 🍀

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