Lack of NHS services in certain areas (TMI warning)

[Someonesayroadtrip]

AIBU?

I sort of know IAMU but un the same breath this is my reality and I just don't know how I go on like this. I know the NHS is amazing, I used to be a nurse before I had children. I think the NHS is amazing but I can't help but feel frustrated at the massive differences across the country.

I have been bleeding since August 3rd after passing a very very large clot. Prior to this I had been experiencing increased discharge, weird spotting and my periods had suddenly become very irregular. I have not stopped bleeding since August 3rd. I now struggle to leave the house as I bleed though the maximum protection available to me. Two GPs have stated to me that I need to be seen urgently for both a scan and a Gyn appointment, in total those two GPs have sent or updated up referrals 7 times. First urgent scan referral was sent on August 3rd which radiology rejected as NOT URGENT. The GP resent that in middle of August.

September 1st GP referred me to Gynaecology as a urgent “2 week referral”. The GP confirmed hospital has accepted this as urgent however the letter I received indicated that it would be a much longer wait as I mentioned informing them of dates in the next 6 months I was unavailable. I know the GP again asked them to see me ASAP on 28/09/2020.

I got hold of appointments today, who were very sympathetic but said I was accepted as urgent but I wouldn’t be contacted until at least March, that urgent appointments are taking 28 weeks currently. Even then it would just be a telephone appointment as they weren’t seeing patients or doing procedures.

I did receive a letter from radiology with an appointment for 19/10/2020 but this will be 10 weeks since I was referred. If I don’t stop bleeding by then it will be 78 days of bleeding.

I am in pain, my children are really scared and confused after seeing me with blood running down my legs on numerous occasions, I am becoming increasingly desperate and depressed. I have not stopped bleeding for a single day, the thought of any day longer is making me very unstable.

I cannot go on like this. I have collapsed twice, I can’t work, I bleed through at the school pick-up which is mortifying for us all, I feel so ill, depressed and afraid at what is happening to my body. It’s having a profound affect in us all as a family, I have children with additional needs and one was excluded this week, he has Autism and learning difficulties, and the fact mummy isn’t as hands on and mummy keeps bleeding has a huge affect when he can’t understand what is happening. Another day this week I took my child to the opticians and I bled though everything and had to call my husband at work to take over while I wrapped my coat around myself and sat in a towel to get home.

I accept and understand this is an unprecedented time and the service is under immense pressure but that doesn’t change my current situation. Why is there such a divide on NHS services? I know that some places are back to a more normal service yet it seems like my area is way behind and that is only going to have a massively determinate affect on waiting lists and future services.

If someone deemed as urgent, like me, needs to wait 28 weeks for a consultation and 10 weeks for a scan, what hope do other non-urgent services have? What am I supposed to do in that time? I can barely function most days, it’s having a huge affect on my mental and physical health.

While I have the greatest sympathy for all you're going through and sincerely hope you get the treatment and support you need ASAP this is not in my experience a covid issue

Myself and others with similar Gynae symptoms have had to fight to get even to the stage of the gp making a referral

There's a thread elsewhere running where the op can't even get a faster gp appointment!

As a former nurse (as am I) to be honest I'd expect you to know this depending on your area of practice

This has long been an issue in the nhs, in my case going back over 30 years.

I'm also on norethisterone now as I thankfully at this point have a more understanding and practical gp at the moment it's very much luck of the draw.

For yourself in the meantime I would suggest for your own self confidence perhaps try wearing incontinence or period pants? I say incontinence as they can be easier and cheaper to get hold of

And I wonder what Sanpro you're using ? I can't use tampons these days as due to scarring it's too painful but I have used them in the past in combination with pads but not necessarily standard period pads but maternity ones.

Suggesting all this NOT because you should be having to buy for your own comfort and privacy at this difficult time.

Has your gp surgery checked your iron and vitamin levels? I'd have thought that's the least they could do as you're likely losing a lot of nutrients via the blood loss, ditto salts, electrolytes etc has that all been covered?

You must be dehydrated too.

Appalling that patients are left in this state but as I said it's been happening for many years it's not a new thing, though I accept it may be even worse at the moment.

Wishing you loads of luck in getting seen and treated ASAP

Utterly crazy as the politicians are insisting the NHS is open

As is Chris Whitty. There are a couple of posters on the Coronavirus board in denial too.

OP Im so sorry you are going through this. Its disgusting

Sorry posted thinking I'd read whole thread and I hadn't

Glad you're getting SOME help and I hope you continue to and soon!

A&E. They will diagnose your problem and put you on the right treatment path. Its how my wife's ovarian cancer was diagnosed.

Thanks. I was referring to your situation as well as mine. It truly is awful.

Hope you’re doing ok.

@Graphista

While I have the greatest sympathy for all you're going through and sincerely hope you get the treatment and support you need ASAP this is not in my experience a covid issue

Myself and others with similar Gynae symptoms have had to fight to get even to the stage of the gp making a referral

There's a thread elsewhere running where the op can't even get a faster gp appointment!

As a former nurse (as am I) to be honest I'd expect you to know this depending on your area of practice

This has long been an issue in the nhs, in my case going back over 30 years.

I'm also on norethisterone now as I thankfully at this point have a more understanding and practical gp at the moment it's very much luck of the draw.

For yourself in the meantime I would suggest for your own self confidence perhaps try wearing incontinence or period pants? I say incontinence as they can be easier and cheaper to get hold of

And I wonder what Sanpro you're using ? I can't use tampons these days as due to scarring it's too painful but I have used them in the past in combination with pads but not necessarily standard period pads but maternity ones.

Suggesting all this NOT because you should be having to buy for your own comfort and privacy at this difficult time.

Has your gp surgery checked your iron and vitamin levels? I'd have thought that's the least they could do as you're likely losing a lot of nutrients via the blood loss, ditto salts, electrolytes etc has that all been covered?

You must be dehydrated too.

Appalling that patients are left in this state but as I said it's been happening for many years it's not a new thing, though I accept it may be even worse at the moment.

Wishing you loads of luck in getting seen and treated ASAP

I am well aware services have been poor for a long time, especially in my area. The point is they are now blaming Covid as their excuse.

I am using super plus tampon, fleece nighttime incontinence pads and period proof pants. I have used the nappy style incontinence pants too but they made me pretty sore.

The point is NOT that I want to be out at the top of at list, but the fact I can't live with constant bleeding. Day 63 of bleeding, getting up and changing sheets/puppy pads, and having blood running down my legs, fainting, passing clots, having my children crying as they are scared of mummy bleeding everywhere, of not being able to leave the house. Etc etc

The point is, that for some women they would be seen in 2 weeks, whereas I won't be seen in 7 months. The differences in service depending where you live is ridiculous. No woman should have to be fainting due to blood loss from weeks of bleeding and not be offered anything.

So sorry for everything others have gone through and are going through too.

Doctor was great, I am really hopeful this will stop the bleeding. I have had it before many years ago and it stopped it very quickly. He also gave me high does tranexamic acid to use together. He tried to get my scan quicker but I said I didn't need to be seen quicker I just needed the blood loss to stop.

He said if my iron was much lower I would have had to stay in but he's hoping that the medication will stop it and allow my iron to recover.

He said gyn would review my scan and escalate if needed and of not they would offer me the coil.

IME complaining publicly makes a difference - I was told it would be at least two years to see a consultant after initial test results showed I needed further investigation and treatment .

Did an online complaint through careopinion - in which I explained I’m now ten bloody years from symptom onset and no further into getting help or treatment - and was seen within six days by a nurse for the further tests . Still waiting to see a consultant but a little bit further on now .

Frustratingly and sadly I was seen on a 50 bed unit for ambulatory surgery/short stay medical and surgical - I was the only patient.

Nurse said they still aren’t really doing anything non urgent - they were told to stop all services in March apart from the most serious . They haven’t yet been given permission to restart most services .

My GP said on phone the other day even if she has a patient that she suspects has serious heart disease, she’s been told they won’t be seen for 18 weeks minimum . Absolutely dreadful .

Totally agree covid is the latest "excuse" not that they lacked excuses!

You're absolutely right it should not be dependent on where in Uk you live and it should not take so damn long!

Really wishing and hoping you get correct treatment ASAP

Not seeing patients now with no good reason is simply storing up for future issues! Those patients have to be seen and treated at some point - or as I fear are the tories simply hoping a significant number will die before being seen?

Covid has to be accounted for of course but whole wards staffed and resources but lying empty is fucking ridiculous!

Bloody hell OP, what dreadful treatment.

It really is the National Covid Service. Most people with Covid stay at home, the NCS only cares about you if you are an inpatient with Covid. Then you get discharged with long Covid and no further treatment or help!

See a solicitor and get them to write a letter threatening legal action for negligence.

It will work and amaze you how quickly an appointment be ones available the next week.

I am so soiry to hear about your problem and disgusted at the nhs on your behalf.

That’s absolutely dreadful OP, I sincerely hope you get the help you need. Women’s healthcare in the NHS is absolutely shite to begin with, seems they have found their justification for it in Covid.

A friends dad has advanced cancer, his treatment was suspended due to Covid and he’s now seriously unwell. I just cannot agree with people who worship the NHS cult saying it’s amazing when there are people getting ill and dying from things that could have been otherwise treated and prevented.

Yes, the NHS can be SHITE absolutely. It's deeply flawed and in many ways a mess, doctors I know are the first to say this.

I will say that I know about four people who have had cancer scares or diagnoses recently; two during lockdown, one since it ended, and one just before. All have been seen within days by specialists and given appropriate treatment. I am not sure if that is just postcode lottery, or if it is because they were not yet really ill and therefore lower risk to go into hospitals. I don't get what is going on at the moment.

The A&E doctor explained that I didn't hit the criteria for the cancer pathway, I do have the symptoms but I am young and I have had children so that reduces my risk of endometrial cancer, although the fact is I used to have horrendous bleeding when I was much younger and I have definitely bled more than the average woman my age. But of course they don't find that out until you get to see them.

My plan is that hopefully this medication works and then I will wait for scan. See what they say and go private.

I think all the NHS workers are brilliant and trying their best, but I think it's just on its bones and not fit for purpose at times.

Check out this organisation which focuses on improving access to healthcare for women

www.ftww.org.uk/

[quote killerofmen]Check out this organisation which focuses on improving access to healthcare for women

www.ftww.org.uk/[/quote]
Thank you.

Really hope you get seen soon OP.

I'm waiting for an appointment for a heart monitor to be inserted in my chest after collapsing a few times and been warned I have a substantial wait as covid has only exacerbated the a!ready long waiting list.

I had emailed hospital concerns on Friday and received a phone call today. I have an appointment for the 23rd 😄 they said she could have had me in sooner, as I'm tomorrow, but wanted to wait for the scan, which is fair enough.

I am so grateful, I apologised a lot about having to complain and she said not to say sorry, she can totally understand and it sounds like I have had an awful time.

It's terrible really that people have to resort to complaining like this. I know everyone is really really trying their best, I know the service is under pressure but at end of the day that doesn't help me when I'm going through it.

The sense of relief I feel is immense. Hopefully these tablets will kick in and I have 2 weeks until my scan. She said that she only received the 2 week referral today, which is odd, because I was told I was rejected from the 2 week one and put instead on their urgent one. However, whatever the issue is, I have an appointment, medication and a scan booked, so hopefully get answers soon enough.

Thanks everyone for the support and so sorry for those having gone through or still going through similar things.

I'm pleased things are moving forward for you.

This happened to me last year. My period went from mega heavy to absolutely horrendous. I had a scan and they said I had fibroids. The blood loss got to the point where I bled from December to May solidly and was losing dozens of clots a day from pea sized to finger sized. I used a moon cup and was bleeding through constantly and had to wear tenna pants. Because of the super Jenny mom cup I could track roughly what I was losing and it was always at least 1 1/2 to 2 litres a month. That's not counting what over flowed. I was exhausted.

The consultant told me that fibroids are oestrogen Fed and he gave me zoladex ( a hormone blocker) . It stopped within 3 months but the side effects were horrendous. I have vaginal atrophy and huge loss of sex drive that I wasn't warned about. But my periods did come back and are tolerable if I plan the second and third day carefully.

I would strongly suggest that you go to a family planning clinic and discuss contraception that will possibly stop the bleeding. I was offered the mirena but I had previously got pregnant on that and so had no faith in it. I know it's not addressing the cause but it will buy you some time.

I am relieved and very pleased to hear the update OP, finally! Hope things are sorted out for you soon, best of luck.

Thank god for that.

You've done amazingly well to get through this. I'd have been at A&E well before then.

I hope things go ok when you get your scan & apt. Do let us know 🌷

Yes that's awful care, really bad. However, in your case I would have gone to a+e a while ago, especially after collapsing.

Ah glad to see your update. Thing is, if you were bleeding like that from any other part of your body I'm sure a+e would seem like the obvious choice, it's a shame that this type of bleeding makes women feel silly about seeking urgent help even when it's clearly not right.

This is terrible, I so feel for year. Bleeding like this can have horrible effects on a woman’s mental health as well as the awful physical effects.

You really should be seen very soon if your referral went as a two week wait. Everyone has come up with some good suggestions. I would second writing to PALS too.

As we all know the Covid situation has affected all referrals which are all behind, but your situation is particularly bad and I hope you get it sorted soon. Take care.