Advice for stroke review appointment

General
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My mum’s first stroke review appointment is tomorrow (7th March) with a consultant who more or less wrote her off. He implied she’d be dead within a year of her stroke - guess what, she’s improving. His colleague told me mum was “failing”.

He and his colleagues were brutal, cruel and manipulative in their attitude towards my mum’s rehab and prognosis. It triggered a big PALS complaint from us, and our MP is involved due to their lack of interest and support post-discharge (and their discharge was a shambles and unsafe).

With this in mind, is there anything I should be doing as her advocate to prepare to meet with this consultant? He might be on the defense and offend us all over again with his horrible attitude.

Can he say or do anything which would make life even more difficult for my mum in the community?

I also want to protect my mum who has aphasia and isn’t speaking clearly enough to fight back yet (believe me, she would if she could - she’s feisty and intelligent).

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Sorry to read this. I’m not sure what you can do to prepare for it, I’m sure others here will have good advice for you as carers for their relatives or from personal experience.
I will say NHS consultants are really hit and miss. I know a lot of people have good experiences, in your case obviously horrific. In my case my neurologist consultant couldn’t read a MRI of my brain…

In the UK you have a right to request a second opinion, which might be useful so you can switch neurologist

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I suggest you record the meeting. You will have to tell the consultant that you want a record in case you forget what you are told.

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If it was me I would go in calmly and twll them how well she is doing despite tte prognosis & then ask them what ekse they are going to do to help her continue to improve. Can they put any referrals in place, does she need any tests doing that type of thing. You could also ask what else can be done to support you too.

He won’t be able to say / do anything that would make things difficult for you. Hopefully he won’t be on the defensive & he’ll becreally happy to see how she has progressed.

Good luck & hope the appointment goes well.

Ann

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Hi EMG - I think the best thing to do is go in with a positive mindset. Put the historical events to one side for this meeting - they can be addressed at a later date and in a different meeting.

This meeting gives you and your Mum the opportunity to get the most out of what is on offer from the NHS.

I feel this might be best achieved by:

  • you and your Mum demonstrating or highlighting all the achievements that have brought you to where you are now and then by asking how these can be taken to the next level
  • asking for a review of her current condition compared to where she was expected to be when discharged a year ago - this will further support your case for targeted help

I would suggest this is an opportunity for you to get your Mum’s care plan back on track i.e. to get what you should have got a year ago had the consultants known the true potential of your Mum.

You should use this as an opportunity to “educate” the consultants and help them see the real Mum and why she needs the support you are asking for.

Your Mum does not need to fight back, at least not at this meeting. This meeting has to be about getting as much as you can in terms of help to enhance the rehabilitation package.

Focus on what you want to get the best outcome for your Mum.

Do not let the consultants side track you or further antagonise you. It will do you good to get them on the defensive or to get their backs up. You have to get them on your side and let them see for themselves that they made a mistake a year ago when they denied your Mum the best chance to recover from the stroke.

Be warned: they will stick together. Nobody will accept any negativity or criticism from you, so don’t waste time on that. Nobody will speak against the consultant (even if they believe he is wrong).

If it is not your natural state, you may have to prepare yourself to remain calm and keep your emotions in check. To get the most out of this meeting, you must only focus on what you want.

Imagine you had been given all the support a year ago and you are now here for further support or to demonstrate why you should be given more support or ongoing support - this might be the NHS wanting to sign your Mum off from their care.

In summary, my advice to you and your Mum is to stay very calm, leave aside all the negatives, focus on what you want or need to improve the ongoing care and rehab of your Mum.

You will need diplomacy and negotiating skills.

Have a good meeting and come back with a positive outcome.

Namaste|
:pray:

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Thanks everyone for your wisdom - incredibly supportive and reassuring. I’ve had to become a ‘hot head’ to safeguard my mum.

I’m always in ‘high alert’ mode as many of our local NHS services are diabolical. Switching it off today is going to be hard, as I deeply resent and fear the consultant’s attitude and nastiness (I think that’s called trauma).

I’ve asked my older brother - who’s Mr Cool as a Cucumber - to attend the review with us, and he’ll be able to tell when I’m simmering a little! After all, as an older sibling he knows exactly what my buttons are because he used to push them as kids :smile:

Wish us luck and I’ll do my best to focus on the positives and mum’s progress.

However, I struggle not to hold consultants to account - they really must be challenged otherwise people will continue to suffer unnecessarily. I work in equality, diversity and inclusion - I’m an activist. It’s in my DNA (I get it from my amazing mum). But she’s also very good at switching on the charm…

Like I said, wish us luck!

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Good luck. Let us know how it all goes x

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Happens all the time ; certainly to me. Brutal is the name of the game ; certainly nobody who has not been through it can have any idea of what it feels like.

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How can this be addressed? Surely there’s somethinh that can be changed in medical guidance?

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The stroke review appointment went well. The consultant was actually supportive and positive. It may have had something to do with the local MP emailing the NHS Trust’s CEO - the turnaround was significant :flushed:

Anyway the outcome was another review in a month or so, and possible referral to Headway’s local carer’s scheme which i could do myself, and recommendations to the community physio team (although it won’t make any difference to them as they have their own limitations).

It became clear, very quickly that we knew more than the consultant in terms of mum’s care and rehab needs. But he listened to us.

The OT’s assessment wasn’t ideal - in a hot, stuffy room while mum was tired and can’t hear commands fully due to a dodgy hearing aid. It annoyed me but let it go as we know what mum’s capable of.

Thanks again for your support, everyone!

:pray::heart:

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Glad the appointment went well & sounds like they are now going to do more follow ups etc. You’ll find you often know more than the drs as you live with it every day.

Best wishes

Ann

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Well done.

Glad the review appointment went well.

With regards to the above, I have thought about why this happens, and I concluded this is something that may have come about as a result of the “claims culture” that was prevalent not so long ago. I think I may even have seen something saying the same. As a result of the claims culture, the NHS would get sued in the event things did not go as they said (positive obviously). For example, if the consultant told you that you would recover full function or you would achieve X and then that did not happen or worse case you died, the consultant would get sued by you (if alive) or your family.

I recall when our GP refused to carry out a mental capacity assessment for my Mum because she said that we could/would sue her in case we (my sister and me) had a disagreement over what the GP had recorded as the outcome of the assessment.

I don’t know the fatality rates post stroke, but I think the reason why the doctors take worse case scenario might be to do with something like this.

Personally, I think they could say it more tactfully even if this is what they want to tell you. This then comes down to communication / presentation skills and they are not trained to deliver this type of news in difficult/stressful conditions.

It’s just something that has been bothering me for some time and that is the best I can come up with.

:pray:

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This is appalling treatment of a patient.
My experience of consultants is a little better as regards their bedside manner but having diagnosed the cause of my stroke ( FFO) and sent me to a heart specialist to have it closed,the consultant just made sure that my driving licence was revoked and discharged me to cope with the situation.
14 years later I have moved on and live an active life despite some limitations from the stroke.
Never give up on your Mum,you and a consultant don’t yet know what she will be capable of doing.
She deserves to be treated with respect and understanding and assistance offered to her to help her progress.
best wishes
Tony

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