Discharged without ever seeing anyone πŸ€” - British Heart Fou...

British Heart Foundation

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Discharged without ever seeing anyone πŸ€”

Instructor57 profile image
β€’44 Replies

Had my HA on 27th February and blue lighted into new cross Wolverhampton.First procedure done on arrival, and 2nd to days later and discharged on 3rd March with 3 stents .

My rehab consisted of a few leaflets through the post and a few telephone calls from a more local hospital and being told to go out and walk !

Yesterday, again over telephone told I'm being discharged from rehab as im apparently progressing well πŸ€”

All determined through the telephone !

Hmmm...... Phones are truly amazing these days 😐

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Instructor57 profile image
Instructor57
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44 Replies
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Instructor57 profile image
Instructor57

Around 12 months ago my GP wrote to the local hospital asking for me to have an endoscopy.2 weeks later I received a letter from the hospital saying that it would be a telephone consultation and it was 6 months away !

It really is incredible what they can see down a phone these days !

boredom profile image
boredom

Same here supposed to have rehab HA last March letter through post saying it would be done on line got email address wrong and times wrong phoned and told them said they would put it on the next 1 still not heard anything. just had a 48 hour holter monitor got results which I didnt understand said they would see me at outpatients clinic no idea when still get very breathless but I do have COPD. Fed up being fobbed off now.

Instructor57 profile image
Instructor57β€’ in reply toboredom

Appears to be very much a postcode lottery sadly !

Mentdent profile image
Mentdent

Sounds like Royal Shrewsbury. Had almost exactly the same experience two years ago. Great stuff at Wolverhampton and bugger all from Shrewsbury.

Instructor57 profile image
Instructor57β€’ in reply toMentdent

Got it in one !

And I must add, Wolverhampton were incredible!

ClairePap profile image
ClairePapβ€’ in reply toInstructor57

Same here from Shrewsbury. I had photocopied leaflets to follow through the post. 18 months ago they told me they were refurbishing the gym!! I must admit Wolverhampton were amazing and my cardiologist is based there. I saw on Facebook Wolverhampton have a new rehab centre- could you ask to go there?

Instructor57 profile image
Instructor57β€’ in reply toClairePap

I am due to speak to Wolverhampton soon, I will discuss all this with them and see what they say or suggest

Mentdent profile image
Mentdentβ€’ in reply toInstructor57

In March 2021 Shrewsbury told me cardiac rehab was closed because of Covid. Apparently there has been no cardiac rehab available in Shrewsbury since 2020. I have been waiting for two years for a cardiac MRI and the earliest it’s likely to be is the end of this year. My experiences with this hospital do not inspire confidence.

Stentrunner profile image
Stentrunner

I did my rehab in the first lockdown. A weekly phone call and the BHF videos courtesy of Lesley and Caroline. Started at Level 2 every morning, and went up a level each week. Then a rowing machine and C25k.

Sodapop13 profile image
Sodapop13

My husband suffered HA in Feb 2022, also blue lights to New Cross, who were amazing. He still attends the rehab, although he pays now as it’s phase 4. It’s through Have a heart Wolverhampton Coronary Aftercare Support Group - might be worth taking a look? He’s found it to be really useful.

Instructor57 profile image
Instructor57β€’ in reply toSodapop13

Many thanks for your suggestions, however

Unfortunately Wolverhampton couldn't do it as in outside their catchment area and can't get a phase 4 as I didn't get a phase 2 !I have been round and round all of this after I came out of hospital, to the point that I realised the stress it was causing was probably doing me no good at all

dunestar profile image
dunestarβ€’ in reply toInstructor57

It is possible to bypass the system if you are a bit cheeky. I've never had a heart attack but got a lot out of attending a phase 4 class before the pandemic shut everything down. I contacted the gym where the sessions were being held and was put in touch with the instructor. She gave me a form for my GP to fill in to say I would benefit from cardiac rehab. It benefitted me because you would get a black look if you stopped too often during the session. Whereas if I'm left to my own devices I can think of lots of excuses why stopping for a breather is a good idea.

Instructor57 profile image
Instructor57β€’ in reply todunestar

I've also spoke to the local phase 4 instructor who won't touch it unless I have completed the previous course , even with a GP letter

Cee-Cee1 profile image
Cee-Cee1

I'm afraid my experience of rehab was much the same as your own, Instructor.

Instructor57 profile image
Instructor57β€’ in reply toCee-Cee1

It's so frustrating, these things were stopped during covid which I understand, however it seems that then just became a good excuse not to start them up again when actually funding and staffing is the (imo) the ongoing reason

Sodapop13 profile image
Sodapop13

Sorry to hear that, still might be worth another call to see if they can share their videos with you - it was all online during you know what but it might give you some guidance? The only number I’ve got is 01902 755695. It’s now run as a charity I think. Take care and stay positive.

Instructor57 profile image
Instructor57β€’ in reply toSodapop13

Many thanks for that !And yes, staying positive is the biggest challenge.

I had got back to the point of daily 40 minutes walk but then hurt my back , so that's held me back a little.

Luckily I was a runner before my HA, and now I'm back to a level of fitness where I have been told I can start couch to 5k again so fingers crossed

Fynndog profile image
Fynndog

I know the feeling. β€œHeart Event” !!!! And no follow up. I had no rehab ( covid) like you a few phone calls . Thankfully someone pointed out the BHF excercuse video. Even then I felt afraid that I was either doing to little or too much.

Very scary being discharged without some sort of supervision. Doctor was really hard to get hold of too.

I’m still here, ticking over so all the very best to you xxx

World1inmotion profile image
World1inmotion

Might be an idea to go through PALS if you think there is something missing from your treatment

Instructor57 profile image
Instructor57β€’ in reply toWorld1inmotion

Thank you for this , I wasn't aware of them I have now emailed them with all details πŸ‘

Sljp0000 profile image
Sljp0000

I guess you've got to ask yourself what you want/need from rehab? It sounds like you understand fitness from yout history and doing pretty well with your exercise (before your back went). Cardio rehab is really about encouraging people that they can get up and go again. If you're not getting any pains and feel fit enough to walk 40 minutes you probably don't need it to be honest. All the best

Susie

Instructor57 profile image
Instructor57β€’ in reply toSljp0000

Yes I agree with you , I do feel however that the process is broken and people expect to get what they are told they WILL get .

But I realise we don't live in that ideal world

But yes, I do feel that personally I can get myself back where I want to be in time .

But that doesn't help the people who need more support for whatever reason.

I have currently been working with my sports physio on sorting my back out and will be resuming and increasing my walks again soon .

Once I'm back to the 40 min walks I will restart Couch to 5k so fingers crossed πŸ™‚πŸ€ž

Truffles2 profile image
Truffles2

It is amazing. After being diagnosed with AF last may and having an ablation in august the only time I met a doctor was on the day of the ablation I only had telephone consults with a cardiac specialist nurse Pre and post. The other time I saw a real person was when I had an echo and my pre-assesment. I have since taken things in to my own hands thought I should get properly checked out and because I have private health insurance I went to see a cardiologist as I was getting breathless and having chest pain, which I did tell the hospital about but they were not interested and GP just kept telling me to go to A&E not refer me anywhere. Anyway the long and short of it private consultant did test CT, and angio and I’m now 9 weeks post CABG as my arteries in my heart were nearly completely blocked. If I had of waited for the more follow up telephone calls I would have been sitting on a time bomb none the wiser.

Mtk1 profile image
Mtk1

Yes this rings true ( excuse the pun), I get a phone call from haematologist every 3 months to discuss my CLL, I also get a phone call from my urologist every 3 months about my bladder cancer and I have just been informed my cardiologist is phoning me 14 months after my HA. Good job I have a phone.

Instructor57 profile image
Instructor57β€’ in reply toMtk1

It's really not good enough is it .But unfortunately I don't see that it will ever get any better .

Talking of phones though, I also did not get the government alert notification last Sunday πŸ€”πŸ€£

Hrty profile image
Hrty

It's quite shocking just how different our experiences are depending on where we live. I was contacted by a rehab nurse shortly after my discharge, initially a catch-up but then booked in for a more in depth conversation. I was then booked in for rehab at the hospital for Phase3 rehab. That finished a few weeks back and I've just started Phase4 at a local Cardiac Rehab centre although I now have to pay for that. I was relatively fit prior to my HA as a result of regular swimming although my weight and diet needed some attention. I see rehab as vital in helping me get my confidence back as it took quite a knock when this all started.

All the best for your continued recovery

Instructor57 profile image
Instructor57β€’ in reply toHrty

Yes, absolutely shocking !And your right , confidence was absolutely my first hurdle .

Luckily I feel that's returning now and I can make progress but it shouldn't be this way 😟

It is possible it has been decided that on balance your recovery has progressed far enough to allow others who may be more needy to access the rehab programme. There were certainly people on my rehab course who would have got a lot more out of it than I did, and that is not a criticism of the course, just a comment on the needs of others. I suggest you talk to the BHF Heart Helpline nurse and explain your circumstances to establish whether it is reasonable that you have been discharged from rehab at an early stage. But if you feel that a continuation of some form of organised rehab plan is required then the BHF run an online programme.

Instructor57 profile image
Instructor57β€’ in reply to

Yes, I take your point completely!There may well be others that would benefit more from rehab.

I have no problem with that whatsoever.

My point was that I did not get a rehab !

I don't consider telephone calls suitable cardiac rehabilitation.

πŸ™…

Swalecliffe88 profile image
Swalecliffe88

πŸ‘πŸ‘πŸ‘πŸ‘πŸ‘ Totally agree just same thing as I said to Andytheextransporter in previous post.

Qualipop profile image
Qualipop

almost 5 years ago, HA and two stents; two more blockages at 64% not bad enough to stent. Never saw a cardiologist, no follow up, no rehab- refused because I use a wheelchair. One meeting with a nurse who handed me a b ook on what to eat. Does wonders for your confidence, NOT

Instructor57 profile image
Instructor57β€’ in reply toQualipop

That's terrible!What is certainly clear from my list is that my case is sadly not unusual 😟

Qualipop profile image
Qualipopβ€’ in reply toInstructor57

I found out 2 yrs later that if I'd seen a different nurse she would probably have said try rehab but I didn't know I could change nurses. This was long before the pandemic so that was no excuse. Seems very common.

Instructor57 profile image
Instructor57

Just emailed PALS (patient advice and liaison service) to complain

MWIC profile image
MWIC

Yeah reality of how bad stuff is - similar story for me a year ago - basically out you go and nothing - zero follow up - rehab - what’s that?

Luckily I came out after angiogram / ballooned, no stents and felt great so β€œhow I’m feeling” is key and research to attempt to understand what you might need to pick up on should another be heading my way

Not a time to start having anything wrong with you so best advice is just don’t get any sort of health issues- sorted

Barre01 profile image
Barre01

hi

After my stents were inserted by the good folks at New Cross I was contacted by a specialist cardiac nurse and referred to Action Heart at Russells Hall - highly recommended rehabilitation programme.

Instructor57 profile image
Instructor57β€’ in reply toBarre01

As I live out of the area I was referred to Shrewsbury.Unfortunately it's a postcode lottery

Barre01 profile image
Barre01β€’ in reply toInstructor57

hopefully Shrewsbury will be able to provide decent support. I took advantage of everything on offer. Good luck

boredom profile image
boredom

I live in N Ireland with no Govt its hard to get anything done only got the op as I was blue lighted to hospital

Instructor57 profile image
Instructor57β€’ in reply toboredom

Wow !Not good 😐

LaceyLady profile image
LaceyLady

we’ll, having had experienced the worst at the Royal Berks, made official complaints that barely got any active action. After being in A Fib fir the past 4 days my hubs took me to Frimley Park hospital, Camberley. The difference was like chalk & cheese!! My treatment was brilliant, drs and nurses wonderful. Definitely choose there again. Had to see my consultant today albeit privately about the meds change he’d planned and told him to pass on my thoughts to the right place concerning the difference.

Coopergirl52 profile image
Coopergirl52

Totally agree with you although did see a consultant before I was discharged and given a book about cardiac rehab and sent on my way what would've been of more help as they want you to make lifestyle changes eg diet would've been nice to get some advice from a dietician as to what you can and cannot eat.

β€’ in reply toCoopergirl52

Plenty of stuff on the BHF website about healthy foods for folks with heart disease. In particular the Mediterranean diet is recommended.

LaceyLady profile image
LaceyLady

nice.org.uk/guidance/ng196

I haven’t had anything

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