Cardio Rehab - low take up: A report... - British Heart Fou...

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Cardio Rehab - low take up

SpiritoftheFloyd
SpiritoftheFloyd

A report has just been published today showing that only 50% of eligible heart patients attend cardio rehab. The figure it seems remains stubbornly low despite the NHS having a target of 85% of patients attending rehab by 2028.

The BHF has an article on the report here :- bhf.org.uk/what-we-do/news-...

The full report is here: - bhf.org.uk/informationsuppo...

The report published by the National Audit of Cardiac Rehabilitation offers a number of reasons for the low take-up, among them from the patient side was too ill, refused, on holiday or returned to work and could not fit it in - which is a rather sad statistic, but perhaps the most depressing figure is that of those who did not attend rehab, 65% were never referred, doctors decided they did not need it, or there were no staff available to provide rehab.

I'm well aware from the posts I've read here that rehab is quite hit and miss around the UK. However we all being told that the NHS/GPs are under ever increasing pressure, by not referring patients, doctors are only increasing that workload by having patients on their books who could be making progress via rehab instead of visiting the GP as they are not progressing. In a similar way the local NHS Trusts by not providing this service only increase the number of A&E visits and hospital admissions for people who fail to improve after a heart event.

71 Replies
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Rehab for me was an essential part of my recovery both physically and mentally- can’t imagine why patients would not attend or dr’s not see it as important to refer. Even once I started back to work my employer gave me the time to attend/ they knew I would be more productive in long run with a return to fitness.

Absolutely agree 100%. I was desperate the attend even where I couldn't due to damaged ribs after cardiac arrest/CPR and had to wait for my ribs to heal

Cant recommend it enough

Gave me reassurance and confidence

I even attend BHF follow on class weekly

Really enjoy it

Well done. It is an excellent service. I've never heard anyone say anything bad about it

I am so wanting it that I tried to go private.

First I telephoned the cardiac nurse, of course, to see if she could point me in the right direction for private rehab. She apparently thought I was asking for it to 'be on the NHS' and was rather short with me saying only it's never offered to people with my conditions (I've not had a heart attack or open heart surgery), suggested I go private and rang off before I could ask how to start the search for private rehab.

A few hours later she emailed with the subject line being 'Urgent' - she told the cardiologist I wanted rehab and she'd told me to go private ( ;) ) at which point he told her to telephone me straight-away and tell me absolutely no rehab until at least April after he's done the cardiac MRI and then he'll refer me if (big if) he feels I'm ready to start it.

And when it's offered I will definitely be there with bells on!

Oh sorry! It's so frustrating when you want to get this going and can't. It's especially maddening when you see reports like this highlighting the poor excuses for people not taking up rehab when they've been offered it.

Fingers crossed for you to get into rehab.

Rosei
Rosei
in reply to Sunnie2day

I can understand your frustration, I was ready to attend cardio rehab , but, extremes vomiting stopped as I was too weak, the cause of my problem was the statin, it had done something nasty to my liver. After that I went to cardio rehab, it was excellent, I can't recommend it enough.

Very interesting and I too am a real supporter - despite being sceptical initially. Those who attend cardio rehab have:

* 26% reduced cardiovascular mortality

* 18% reduced hospital admissions

* 13% reduced all-cause mortality

* Reduced risk of further events

* Improved quality of life.

According to BHF reported research at bhf.org.uk/for-professional...

I haven't seen that report before - very interesting.

I was approached about rehab while still in hospital, was given a leaflet explaining the benefits of rehab and was told that the rehab people would contact me after discharge - don't recall being given an option - and rightly so!

A week after discharge and I got a phone call (my heart hospital was in a different NHS trust area to where I like, but the contact was from the local service, one of point of today's report was of people dropping out by virtue of different NHS tusts being involved, not the case with me) asking me when could I attend to be assessed.

Prior to my heart attack I'd never been in a gym, but after being handed the leaflet in hospital I looked up cardio rehab and realised this was something I really needed to do.

The connection between the hospital and my NHS Trust was excellent. I had an ICD fitted in August and within a week rehab was on the phone arranging for me to go back to the gym.

Absolutely the same experience. Different trusts/areas for the hospital and where I live, but I got leaflets (and visits from the hospital's team) while an in-patient, and a referral to the local rehabilitation physio team when I was discharged. I actually pushed for them to take me a bit early, because I felt quite well, but any delay was only about their being sure that I was recovered enough physically.

Then, when I completed the six-week programme, I got a referral from the local physio team back to the gym that I had been attending previously (but a bit sporadically). I'm now going there at least weekly - and I even get a discount on my pre-existing membership, because of the referral. Not that I would recommend my experience as a way to get a gym discount :-)

A couple of the gym's physios have specific cardio training, so I'm expected to ask for one of them if I want to talk about my exercise programme, but that's about it.

Add in emptier bank balance because of buying lots of pretty, smaller clothes 🙂🙂🙂❤️❤️❤️☺️☺️☺️☺️

Looking forward to being one of the slimmest people at my work party tomorrow instead of playing the funny fat lady.

Will be throwing some shapes, and have already selected healthiest menu items, including asking for a fruit salad instead of the high calorie puds on offer.

Just done mention gin or Prosecco!

I understand the comment about bank balance/clothes. The BHF shop got my entire wardrobe 6 months ago - the only thing left that fitted me were my shoes 😊😊

I think you just mentioned gin. Where’s Lezzers?

Did someone say gin? 😂

Milkfairy
MilkfairyHeart Star
in reply to Lezzers

Yes Lezzers gin and prosecco have both been mentioned in the same thread!

Milkfairy
MilkfairyHeart Star
in reply to Sillyfroggy

Excellent there is always a silver lining in every cloud so they say😊

Sadly there is a bit of a postcode lottery. Where I live there are too few cardiac nurses, so it was 17 weeks before I was able to have an assessment. No contact from them at all when I left hospital and I pushed for apt. Actual programme was good (although I have seen better gym equipment in local charity shops!) and, of course, exercise was helpful, confidence boosting etc. Cannot recommend enough. About to join phase 4 and really looking forward to it.

BUT - 17 weeks post discharge would mean that many people would be back at work or feel sufficiently recovered not to think it worthwhile. The gap between discharge and assessment needs to be shorter to capture many more.

Of course not attending rehab, not referring (although in my case it was hospital who referred) means that education is missed, and in long run may cost NHS more as relapse may happen to some.

And then there is the matter of adequately funding service and employing sufficient staff to run it effectively.

That said, in spite of shortcomings, it was brilliant and I am looking forward to continuing post Xmas.

Good point - there is a need to catch people as early as possible, otherwise they could be back in work etc and think they don't need rehab.

Glad you kept pushing, even if you had to wait 17 weeks for an assessment.

Milkfairy
MilkfairyHeart Star

Cardiac rehab is so important.

It's not just about physical exercise.

They are very conscious of your emotions well being too.

I had a wonderful cardiac rehab nurse 7 years ago and we are still in touch.

Unfortunately not all areas offer rehab to all heart patients.

Patients with Heart function problems are not getting access to this really important care.

Indeed, the emotional support is also very important - I felt lost after being discharged from hospital until I got into rehab

Wh is cardi rehab

Here's a link to the BHF article on the subject:-

bhf.org.uk/informationsuppo...

I do think the times of the sessions are unfavourable for those in work though. I’m lucky enough to have agreement from work that it is as important as the drugs for my recovery, and I do it in job time

I'm lucky in that I'm retired. If you have an understanding employer that is very helpful. I don't understand an employer being resistant - it is after all in their interest that you get well and are therefore able to make a full contribution in work

I didn’t get offered rehab after either of my AVR ops and was back at work after 12 weeks. Not sure whether I should have pushed for it, not heard very good reports locally. Emotionally I was fine, probably because I knew from the age of 16 that I would eventually need valve surgery so it wasn’t a surprise when I finally had my first AVR at 52. I also had great support from my husband and friends. Would probably have found the lifestyle help useful though.

I've been attending rehab for seven years now since my heart attack at 47. It wasn't easy at first fitting it in with work etc, I probably make about 60% of sessions now, but I can honestly say they are- along with the medication, the major factor in my recovery and being able to continue working.

Hi I have not been offered rehab how do you get it

Ask your GP to refer you

I attended my full rehab course after HA and insertion of 2 stents and may I say the Watch Close Coventry team were absolutely fantastic and I would recommend them to anybody with heart issues.

I completely agree: the folk at Walsgrave and Watch Cl. have been great. Sad that other areas don't get the same care.

I would love rehab but when I asked about it was told it isn't funded in my area. Apparently there is a charity that funds it the other end of the county that I could be referred to but as that is 2 hours drive away (assuming you have a licence and a car...) I couldn't follow that up. I was/am very disappointed as I need to rebuild confidence to exercise, go out alone and still have lots of questions about my condition and how best to move forward.

I had a check up at the hospital after 2 months to see if I was fit enough for rehab. There was then 6 weeks of free rehab - stages 1-3. After that I joined the local stage 4 rehab which has to be paid for. I was fortunate that my employer allowed me to work flexible hours so I could attend. However, the organisation I attend also have some evening classes as they have several venues. I didn't have a heart attack but had 2 stents - have unstable angina. I have now been going for nearly 3 years and thoroughly enjoy it. It's not all about the exercise, there is a feeling of belonging to a group who understand and support each other. I have now retired and try to go 3 times a week. I would really advise people to go if they can, it helps mentally as well as physically.

My brother was one who didn’t attend, he felt the appointment came too soon after a quad by pass, and he was afraid of having to “do exercises” so soon and of causing harm, nor was he ready mentally suffering as he was from “pump Head”He was living far away at the time, so I was unable to help very much.

I have had two lots of heart surgery and have been deemed unsuitable for rehab both times. I have tried to find a private fitness instructor who may be able to suggest light exercises to keep my upper body, arms and leg muscles from wasting away as I am not as mobile as I was.

Our hospital did suggest that I joined a fitness group about 30 miles from where I lived but the instructor wouldn't help because I hadn't had any rehab and it was a long way to travel. Vicious circle.

I was offered help with the emotional side but the Consultant concentrated on my childhood rather than my feelings of the effects of heart surgery.

Rehab, like many others have said, was absolutely crucial to my recovery. That said I know it is hit and miss around the country and not everyone is comfortable in a gym style environment. I’ve joined a number of patient groups and I’d highly recommend doing this. One group is looking at what rehabilitation looks like - consistently the term rehabilitation is disliked. For people who have never exercised it’s not liberating to be ‘back in the gym’ whereas for me it made me feel great. Some rehabilitation takes place in clinical environments which is off putting for patients with white coat syndrome. Overall rehabilitation in the community is the goal with a broader look at what exercise means to different patients. Mentally or psychologically, however you phrase it , for me having a place to go each week for 6 weeks enabled me to process the trauma of what happened and put into perspective what my new normal was, and continues to be. I was in a group of all men but once I got my head around that I came to enjoy each session. The knowledge of the trainers and cardiac nurses really helped me make a healthy progression back into my normal life again. It’s vital those opting out of rehabilitation are targeted with some encouraging words to enable them to see how valuable it can be. I worry that the wrong people are opting out - as in those who perhaps feel isolated as a result of their health issues - they are the very people who need rehab the most to rebuild confidence.

I am in the midst of cardio rehab right now. I know that this is a precious resource - my neighbouring health authority does not offer it and I had to wait 3 months for a place because it is oversubscribed. Such a shame when the NHS is in such dire straits that a community, preventative service is so patchily provided.

In my area it seems that Cardiac Rehab is offered if you fit into the more well understood categories of heart event such as for example MI, stents or heart bypass surgery. Because my heart condition doesn’t quite fit into that box I haven’t been offered Cardiac Rehab. My GP has asked for a referral but has warned me not to get my hopes up because I have a rare condition and they may be reluctant to take me on.

I have had to have a pacemaker and ICD fitted to fix arrhythmias and guard against sudden cardiac arrest which my condition apparently can cause. I was used to being fairly active and feel a bit lost now, not knowing whether I can do any of the things I used to do in case it pushes my heart too much or triggers a cardiac arrest. Similarly concerned about going back to work which is a fairly stressful job.

I had a read of the BHF article and interestingly it does suggest that the Rehab programme would benefit from being expanded more for other heart conditions such as heart failure, so hopefully more people can be helped in future.

In the meantime I will continue to try and find routes into a rehab programme..

Apparently there was a waiting list for my area (South Wales). I went and really enjoyed it, needed it and found it helped me loads. I really miss my sessions. My nurses were fantastic and I would recommend it to anyone.

I totally agree with you SpiritoftheFloyd and I for one benefited so much from the Cardio Rehab that I am sure it would have affected my outcomes, had I not had this opportunity afforded to me. However, one this puzzles me, I had thought that the rehab was a right of passage through the hospital after surgery and was not necessary for the family doctor to refer for this rehab - this is opposed to the attendance at a local gym for the extended cardio rehab, that I believe is referred to through the hospital and then the GP.

From a personal point of view I would have found it foolish to believe any medical staff could think Cardio Rehab to be a waste of time or not required or of no benefit, rather a critical part of rehab

I found my first 2 rehabs so valuable and am expecting to go on another after seeing my cardiologist in January. I for one found they gave me so much confidence.

Joan x

Rehab is essential to keep you has healthy as possible. Sometimes you don't feel like going on bad days, but you feel so much better afterwards, of course if you are ill don't attend, but get back when feeling better. I'm 62 and I have dilated cardiomiopathy but I do enjoy it most days and you meet people who are in the same boat, so new year new start people. Merry christmas xx

Hi Spirit. I wonder how accurate these figures are? My HA was 18 months ago and I loved the rehab so much that I'm now a volunteer there. However, 3 weeks ago I had another angioplasty, which "qualifies" me for another round of rehab. I suspect the majority of people wouldn't bother to repeat it, thus making the take-up figures look disappointing. I have been offered the course at a different trust to the one I'm volunteering at, so I'm going to indulge in a bit of industrial espionage!!

Hi Alison_L

I had a heart attack/cardiac arrest in December 2018 and went to cardio rehab in March 2019. In August 2019 I was fitted with an ICD, so qualified for a further 12 weeks in the gym, which I'm now doing.

Having enjoyed it so much the first time around, I was keen to go around again. Everyone I've spoken to said they are glad they're doing rehab and really enjoying it and feeling the benefit, so I'd be surprised if people who had done rehab didn't take up the offer.

I think in the report"uptake was calculated for four diagnosis groups; MI, MI + PCI, PCI and CABG. To avoid

double counting, patients with an MI and CABG in the same year were counted in theCABG group"

Ah yes. Mine were in 2 different years - MI+PCI in 2018, PCI in 2019, so I'm adding a plus to the figures.

In my Cardio Rehab group, there were 20 of us and there were two sessions a week that I know of. I'm assuming there were another 20 in that group.

I'm a great believer in cardiac rehab. I wasn't offered it at the hospital stage as I hadn't had a heart attack or stents or anything. I joined the local gym and was exercising on my own. They have Stage 4 classes, so I got my GP to refer me. As I'm a member of the gym anyway, it's free. Otherwise you pay £3.50 for an hour session. I love it. We are a very friendly group and keep each other going. It has made a big difference to my level of fitness.

I desperately wanted the rehab for the confidence boost of having someone qualified nearby. I was refused. They have no seated rehab for the disabled. A letter from the Cardiac manager said "But you were given a book with suggestions for exercises. It's just not the same. I was too afraid to even try hem and most would have been impossible because of my disability. A year on after many letters and phone calls and I am now awaiting seated exercise but not supervised by anyone with cardiac knowledge. That may not even happen as their funding has been cut by 75% for next year.

Im so sorry this has been your experience. Sounds incredibly frustrating and isolating.

I hope the seated rehab will help

I had a type 2 non STEMI MI a few years ago and rapid PAF after that until 2nd ablation. I tried to get access to Cardio rehab and could not access it as I was told I hadn't had a real heart attack - arteries arent blocked. Since 2nd ablation a year ago (and probably preceding it to a lesser extent - thought it all was side effects of meds) I have been suffering from debilitating breathlessness, dizziness, chest/jaw pain, exhaustion on exercising (slow walking) and ventricular and atrial ectopics, ventricular tachycardia episodes, etc. Still cant access it. Hoping that results of recent tests lead to some diagnosis and way forward - hopefully including cardio rehab!!

I can't recommend Cardio Rehab enough! It just a brilliant programme and it had helped and inspired me as has this forum. I have always been physically active so my HA was quite a shock and once I was on the Cardio Rehab Programme the physio team was always telling me to ease up! But what helped me most were the volunteers. These are guys and gals who had been through the same as you and I and heald a bright light at the end of a tunnel. They showed me there is life after a Heart Attack and as Gail1967 says in her post, it was the mental aspect of Cardio Rehab that helped me the most.

On the comment about those who don't attend Cardio Rehab, remember, this is about your 'quality of life'. For me, I believe it has most definitely helped me and I feel it has also helped me cope with the side effects of my medication, a big plus here. I have also noticed when I miss a session, I feel like crap a day or two later and if I miss a week... Well, I think the moderator would smack my wrist if I wrote how felt. :-o

In 2002 I had open heart surgery to replace 2 damaged valves, here in France where we live. A week after the operation I was transferred by ambulance to a dedicated convalescence home, where I spent one month getting back on my feet. I was never asked whether or not I wanted this it was simply automatic and a part of the procedure.

The care was fantastic.

That's pretty impressive!

I would have loved to go to rehab but I was not referred despite it saying in the book that I should be because I have an implanted defibrillator. It would have helped my recovery a great deal

When I was doing rehab after my heart attack, once they became aware that I was having an ICD they told me that I'd be able to come back for more rehab.

I made a point of telling the hospital when I had the ICD fitted that I expected to go back to rehab and asked them to make sure they referred me - within a week I had a phone call from cardio rehab - brilliant service.

One thing I've learnt is that you have to make your voice heard to ensure you get the treatment you need.

I was offered rehab when only a eek out of hospital and told which hospital to attend but as I still wasn’t driving I couldn’t go. I asked for another hospital that I knew I could get to by bus but was told I had to go to the first.

Sorry to hear that, not a very helpful response from them. The more horror stories I hear, the more I realise how good the cardio rehab is where I live, but it shouldn't be a lottery!

Yes, we’re very lucky on the Wirral aren’t we, Spirit? My rehab was delayed about 6 weeks, I think, because I was so ill with an electrolyte imbalance. My CABG was in April 18 & they sent me an appointment for the beginning of June originally but at the time I was still in the HDU of Arrowe Park. My husband phoned up to cancel the appointment & after that they phoned up a few times to see how I was. I eventually went for my assessment in August. I was quite weak then but they gradually built up my strength & my confidence. I can’t thank them enough.

Jean

Hi Jean

We certainly are. I've been for my last session last Thursday, back for more on Thursday 2nd January!

Hope you have a lovely Christmas

Russell

Are you going on to the next stage at the Concourse, Russell, I ‘d just started there this time last year. I finished in March. I went to the afternoon session because apparently the gym itself was busy on a Monday morning. Mind you it was quite busy on a Monday afternoon as well.

Jean

Hi Jean

I'll be going to St Caths until the end of January, will then be moving on to the gym in the Concourse, hopefully on a Monday afternoon.

Russell

How do you get onto cardio rehab.. i would love to do it but my consultant said "its difficult to find other ppl like you" (31year old female Cardiac arrest) and that was basically it...

That's a strange comment for the consultant to make - can I suggest you approach your GP and ask him/her to refer you to cardio rehab

I had an MI 3 years ago and was discharged following a thrombectomy, an echo which showed a have a pfo. I was given a bunch of BHF booklets on discharge and that is the last contact I have had with the hospital or the cardiac unit.

I have had no follow up I get standard blood tests done by my surgery as part of their standard annual review, weight BP etc and that's it. My GP issues my medication on repeat and this has never been reviewed in 3 years despite requests.

To say I feel abandoned is putting it mildly I have made various approaches to both the GP practice, the hospital and the health board who say the standard of care is normal.

I can see from your previous posts that you're in Scotland. The NHS there may think this is normal but it certainly isn't in England. I would suggest that you move to another GP but see that your GP closed about 9 months ago and you're new one is in the next town! You really are not getting much of a service! I'm so sorry, the NHS should be doing better than this.

Interesting report, I had five stents fitted,was never offered cardiac rehab. When I tried to find out about it f rom the hospital, the sister on the ward said “ well , we all know what we should do to stay healthy, don’t we ? I left hospital and started to build up my own fitness levels.

Sadly there are always a few people who really shouldn't be in a job that involves interacting with other people - you seem to have come up against one on this occasion. Her answer is totally inappropriate!

Well know 3 others who had heart attacks in 2018/19 . 2 of us went to rehab which was great and well worthwhile. The other two went into denial re their Heart attacks and stenting and never attended rehab even though they met the cardio nurse .

Oh Dear! Denial is a strong urge for a lot of people, sadly denial won't improve the chances of making a good recovery, but you can't make people do things they don't want to. While they may retreat into their shell it must be distressing for their family!

I did not get any rehab. I had a STEMI 3 years ago and on despite chasing both cardiology and GP I got nowhere. Maybe just as well. On return to work my employer informed me they would not have supported any time off to attend even using half day holidays. They deemed it disruptive

I'm sorry that you received no help from any quarter.

To be honest I think you're employers' attitude is pretty shocking. If they regard their employees obtaining treatment to aid their recovery from a serious medical condition as disruptive, I guess they are equally dismissive of employees being ill. My belief that we'd left the Victorian era behind is clearly misplaced when there are employers like this. You have my sympathy

my husband had 2 stents fitted in September.. we’re in Forth Valley Health Board area in Central Scotland.. he received a letter mid November offering cardio rehab.. i myself have angina.. i asked if i could also go along and take part as i’d been given a return referral to Cardiologist.. you’re very welcome to come along and join in said the Heart nurse.. it’s been absolutely brilliant!... my advice to anyone who’s offered the chance of rehab...take it!

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