GP seriously letting us down - Heart failure and serious cellulitis

[mummyof2munchkins]

Can I please ask advice on how to get my mum the help she desperately needs?

She is 62 and is currently in heart failure and has AF. Her legs have swollen to a ridiculous state, in the last three weeks she has developed ulcers on both legs that are weeping constantly, dressing is changed and within 30 mins its wet again. The ulcers look infected and the swelling is raising up her leg and is now so bad she can barely bend her knee.

She has struggled to get support from GP or district nurse. Visits booked with district nurse but she doesn't show up. GP says he can't help and referred her to the Leg Ulcer clinic at the hospital, appointment at hospital was arranged but hospital cancelled on the day. We called 111 and were told she isn't an emergency and must see her GP.

She is rapidly getting worse, her legs are awful and have open, weeping sores. She is in constant pain. She has serious mobility issues and couldn't manage a visit to A&E without support and nobody is allowed to accompany her. She had to go to A&E after passing out due to AF and it was a nightmare for her, nobody allowed to help her, she couldn't even get to the loo and had an accident.

I really fear she will end up with sepsis. Really struggling to get her the help she needs. I will find the money to pay for a private consultation if necessary but no idea how to go about it.

If I were you I'd ring 111 for advice and take it from there.

Who is managing her heart failure? Does she have a cardiologist or heart failure nurse?

If so has her heart failure medication been reviewed recently - ask for this. If the legs are rapidly swelling then the heart failure is the underlying problem that needs controlling and no leg dressings will get to the bottom of it.

Secondly find out why she hasn't been seen by the District Nurse yet - if they haven't been, they need to make another appointment. There are Tissue Viability Nurses in the community if she is unable to get to the clinic in hospital.

111 advised seeing the GP. Several visits to the GP but no progress, just referred to hospital and advised to speak to district nurse team. We go round and round in circles and the only thing that changes is mum is getting much worse.

That sounds shockingly bad. Have you thought of phoning your area's PALS? Not to complain but to ask if they can intervene on your behalf? (I'm not an expert at all, btw.)

She can't get an appointment with cardiologist, clinic has been closed down. It's like she doesn't have covid so not a priority. I can't believe how quickly she is deteriorating.

I'll try and find details for PALS.

What is it the gp thinks he cant help with? The ulcers? As Anna says her heart is the underlying problem so either he needs to review that or refer her on to whoever is managing that.

Call the district nurses daily.

I’d be considering making a safeguarding referral for your mum - she is at risk of harm from negligence from the community nursing team and her GP.

Can your mum see a different GP?

This is so shocking, you should still be able to access cardiology for serious issues, do you know who her cardiologist is as you should be able to contact the secretary.
All my teen dd's cardiology appointments have been cancelled but we still have contact numbers if we need advice and they said she can be seen if needed, i really can't believe that adult cardiology isn't doing that too.

I'll check if she can see somebody else at the GP practice. It does seem that they only look at the ulcers and never really consider the whole picture.

A safeguarding referral may be a good option, not sure how to go about this but I feel that we need somebody to intervene and help her.

That's really bad, I'm so sorry your mum isn't getting the best care. As PPs have said it sounds like she needs a review of her heart meds and from your OP, likely antibiotics for her legs if she is developing cellulitis. As you say, there is a risk of sepsis. Has she been seen by a nurse in the surgery, if she can get there? Who is changing her dressings at the moment?
I'd call the GP daily until this is sorted, it sounds urgent.

My sister who lives with her is changing dressings. I'll contact the surgery tomorrow and ask for a full review of her condition and medication. GP is not currently allowing anybody to accompany mum when she sees him so it's really difficult to push for more support. Mum is very old school and doesn't like to make a fuss. Her need to be friendly and understanding will probably kill her.

I know you've said it would be difficult both physically and mentally to go to A&E but I think it's an option you need to consider.

If the swelling is tracking up her legs from the ulcer site she is at risk of sepsis and her heart is already weak.

You can't force a GP to see you, you can try repeat calls and requests but if they say no, it won't ultimately help you.

If it is possible to get her in a car, I think show up at the hospital, they do allow exceptions to allow people to stay with the patient in some circumstances, specifically with cases such as dementia or mental health conditions, I don't know if either of those would be applicable.

Even if you can't stay and she has to be alone, while that would be upsetting, if she needs medical attention then the mental distress may be the lesser of 2 evils in this case.

I hope you and your mum get the support and care you need.

Id be very tempted to take her to a walk in centre or A&E.
There are non Covid areas for people like your mum so she'd be protected in that respect.

It sounds awful the poor thing. They can then treat her and get the ball rolling with safeguarding her and community care.

Lots of people in the medical profession are worried they are not seeing patients they normally would because of Covid and I think your mum would come under that category.

I would ask to see another GP in the practice and if the situation doesn't change write a written letter of complaint to both your GP practice and the District nurses. I agree that PALS would be a good option too if available.

Her worry about A&E is that they absolutely refuse to allow anybody with her, she can't manage on her own due to mobility problems. Her last visit to A&E 4 weeks ago resulted in her being left on a trolley in a corridor unable to get anybody's attention to help her to the toilet and she wet herself. She was sent home once her heart rate settled but she was in such a state she swears she'd rather die than go back there on her own.

The walk in doesn't currently have a doctor so they can only dress her legs not get anything sorted out for her.

It really does feel like she's a victim of everything closing down due to Covid. She needs an op on her heart but there's no chance that will happen any time soon. In the meantime she's filling up with fluid. It's heart-breaking that she is deteriorating this way.

Can you insist that you have to be with her at a&e? I don’t think gp will do much.

The cardiologist still exists. There should still be a source of advice for the cardiologists existing and new patients - COVID is not an excuse.

Potentially she doesn't even need an appointment, just GP discussing her on the phone with said cardiologist. Clinics are also finding other ways to see their patients such as video consults. She may not be able to get an appointment but her GP should be able to generate one for her by contacting the cardiologist and pointing out that her condition has deteriorated and she is in crisis.

Leg ulcers are a red herring here, this is all about getting her heart failure reassessed.

I don't know if this helps but you mention paying privately., Boots launched a private GP service partnership with an app called Livi this week. They're offering appts at a discount - usually £39 but they're charging £29.

www.boots.com/health-pharmacy-advice/online-gp

If you fail to get support from your own Gp this might be an option 🤷🏻‍♀️

What is the reason why the hospital cancelled on the day, sounds like it's them you need to be ringing. Her gp referred her so not sure if anything else they can do.

My dad is seeing his cardiologist so they are still treating cases, I wouldn't say his condition Is really serious.

I think your mum has been let down by a lot of people.

My DM has a similar condition and what you describing is one of my biggest nightmares.

The GP, district nursing team and 111 have been appalling and let your DM down terribly. I would try;

1. Google your mums nhs trust and 'heart failure nurse' to get contact details and call them directly. The HF nurses seem to be the people who make things happen and stop patients falling through cracks. Focus on the HF aspect, her legs are swelling badly because her medication is wrong and the inability to control it has led to ulcers that are infected and deteriorating rapidly as is she.

1. The British Heart foundation has a phone line manned by specialist nurses 0300 330 3311. Call and ask them how best to proceed. They may be able intervene and contact medical staff for your DM.

1. https://pumpingmarvellous.org is a HF patients charity and may also be able help.

Good luck OP, let us know how you get on

I'm not a nurse, so please check this before proceeding. When my sister has leg ulcers, the pain is off the charts when they are infected (hot to touch around edges and green pus). She submerges them in a footbath of potasium permanganate in Luke warm water for 30 mins. Cleans out the wound with a sterile dressing pack and saline, then covers with Melolin Dressing Pad (all other brands stick when trying to clean next time, these don't. Then she wraps in clean dressings. The gunk seeps through within hours, but she leaves it alone and does this daily. She's in Ireland and this is the wound treatment from her health visitor and GP along with steroids (no heart problem).
Best of luck getting her faster care. Urgent referral to the skin or vascular clinic for cleaning and dressing is essential.