Absolute mess - oh and no one cares and I am invi... - LUPUS UK

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Absolute mess - oh and no one cares and I am invisible


How in the UK, with national health service, Human Rights and the Equality and Diability Act 2010, is it allowed for someone to be completely abandoned and have zero access to healthcare. No GP, no rheumatologist, nothing.

Have SLE, which is fairly newly diagnosed in Oct 2019, not treated (intolerant to hydroxycholoroquine). After receving a generic letter from the department, I left a voicemail on the adviceline. That was a week last Thursday, still waiting for a call back.

Chronic/permanament leukopenia and neutropenia, severe B12 deficiency, migrains, PPPD.

Migrains are crippling. Neurologist gave two suggested medications, firsrt was proponoalol, took for two days and was awake for two full days, I was wired, so stopped taking it. The second suggested he gave clear instructions of tests to carry out before prescribing. However, a new GP at former practice, ignored this and still prescribed it. Due to having both cardio and respiratory issues since battling pnueomnia and pluerisy in March and April 2019, I am very cautious about trying it and I am not remotely comfortable taking new meds with no healthcare.

Dizziness (PPPD) is driving me up the wall, anxiety is through the roof and the heat is bothering me. I always get a rash on the inside of my knees anyway whenever it is warm/sunny. But this is totally different. I am new to SLE so ahve no idea what is normal, what isn't. Very itchy, red and angry rash all over my legs, particularly bad at ankles, inside of knee, top of calf, near inside of the knee joint and thighs and hamstrings. Scratching that much I have broken skin at several points. Using Elecon that the dermatologist gave me to try to stop the itch, but the rash is going nowhere.

SLE isn't even being moniteroed. Last had bloods done in Feb, but not given the results due to the failure that is BCUHB and devolved NHS as rheumatology care in Wales is near enough non-existent/ Wasn't given thte results from December 2019 blood either. The rheumatologist said he would give a written response to all my rheumatology/SLE questions. that was Feb 7th, I'm still waiting. Knew it was never going to happen anyway.

MP is utterly useless. He is nothing compared to the previous and very well respected MP and he was even helping me with the failuree that is North Wales Mental Health Team before the GE in Dec. Welsh AM useless, too.

I am at a total loss. How can anyone be left in this position? How can no one being doing anything about the state that BCUHB is in? Been in special measures since 2015 - 5 very long years and nothing, not a soul is doing anything about it.

Finally had a phonecall yesterday from someone who works for Mark Isherwood. Genuine quote from he when I asked how can I get healthcare "Well.... if you move to Chester..." Errrr, we have a NATIONAL health service, not a local health service and you shouldn't have to move counties to get healthcare! I also asked what was being done about BCUHB being in special measures and the state of it. After a lot of fluffing around and 'eerrrrrr' , 'errrrmmmm' 'welll...', I eventully got half an ansewr of 'well..... they (Welsh gov) have meetings with them to discuss it'. So just talking, no doing, no actions, no changing things?

What the hell has to happen before ANYONE does anything about the state of North Wales!? How many people have to die? Or does it not matter at all? No one cares (those in power).

They all seems perfectly happy with the way things are here.

I desperately need help, desperately need healthcare. Can't even go for walks atm. I would jump at the chance to have a phone consultation with a rheumatologist, GP, anyone!

I am on mertazapine, it works wonders, not taken it since Monday as I only have 14 tablets left and no way of ordering more. I need other prescriptions, but can't order. I am on ESA and UC, sick note is due to run out on June 10th, need a new one - no chance of getting one.

Straned in the village due to no car, no public transport, a small amount saved for a car so far, can't get a tax refund that I so desperately need (near enough same amount that I have saved up for a car (£640), PIP going through mandatory reconsideration.

How can anyone be left like this? I know I am nothing. I realy do hate this life with an absolute passion. I wish I had the balls to end it, but I can't I have my niece and nephew that I would give anything to hug them. Can't remeber the last time I had a hug was.

And NONE of this is to do with COVID-19! So no, it won't improve after the pandemic. Have no idea what is going on with the IPFR form that is/was going through for me to access rheumatology at Countess of Chester. It's probably lost in the air somewhere. Due to no healthcare, there sure as hell isn't anyone sorting it all out.

53 Replies

"Finally had a phonecall yesterday from someone who works for Mark Isherwood. Genuine quote from he when I asked how can I get healthcare "Well.... if you move to Chester..." Errrr, we have a NATIONAL health service, not a local health service and you shouldn't have to move counties to get healthcare"

Can I just disillusion you of one thing: if you live in N Wales then you are not moving counties if you move to Chester, you are moving COUNTRIES. There is no UK NHS, healthcare in Wales comes under the devolved government, just as it does in Scotland. Even within England it can be a postcode lottery because although officially you CAN choose which hospital you are referred to at the outset and even name a consultant, the reality is that the department/consultant can refuse to accept you as a patient if they are overloaded with patients from their catchment area.

Yes, ok, I know my terminilogy was wrong and I knew when I was typing it, but couldn't think.

But is that seriously all you got from that? Within NHS England, as you say, you have freedom of choice of hospital. Not in Wales. NHS Engalnd has full treatment options for rheumaology care - infusion therapy that has great success to that receive it in England is not available at all within NHS Wales. Wales has no Centres of Excellence, England has 5 (I think?). Wales has no lupus specialists.

Before the pandemic, Wrexham Maelor had a 2+ year wait for rheumatology and they have no rheumatologists. Glan Clwyd has one rheumatologist, no rheumatology department, no aftercare and a 12 month wait. Dread to think what these wait times would be like now. Countess, which is far closer to me than either of these hospitals, has a rheumatology department, four rheumatologists, full treatments options, physios, occupational therapists and councellors all within department to help with diagnosis and day to day living - far superior to the care you will recieve in Wales.

Orthopaedics, ENT and respiratory medicine also have 12 month+ wait times. These are all as of Autumn 2019.

No, I got all the rest too. I've been following Wendy through her entire crusade. I have a list of places in the UK I wouldn't live if you paid me to - nowhere in Wales.

Wales is stunning though. So much countryside, so much natural beauty, so much cleaner air, friendly people, too. Just don't expect healthcare.

And not a soul cares or does anything about it. It is perfectly acceptable to have no healthcare - apparently.

I know it well - I lived a few miles from the border until I was 18. Wouldn't go back though.

You need to ask to be referred to Oswestry. It's the world's leading centre for any arthritic type disease. I cannot fault them. I too live in Wales and agree with everything you say about how poor healthcare is. They only look after the elderly here I'm afraid, whereas, in England, they don't. But, we all need looking after. I was lucky enough to live across the border when my symptoms first started. The NHS has to change. We need to scrap lots of small GP practices, I have had better service using the on-line system over the past few weeks and have more major healthcare centre's with transport provided. Hospitals all need to specialise and if people didn't go on about missing family or wanting visits from them it could happen. We need to make a choice, get better or see family. GPs cannot know everything, they are a first port of call, nothing else. The government has to take healthcare in Wales in hand. It's not good enough. Good Luck with your plight.

I CANNOT ask to be reffered to Oswestry as I HAVE NO ACCESS TO GP OR PRIMARY CARE!

I have/had an IPFR form going through from March 13th, to access rheumatology at Countess within 4-6 weeks. No idea what is going on with that now. It is lost in the air somewhere with NO ONE doing anything about it DUE TO NO ACCESS TO HEALTHCARE. Last I heard was in mid April and rheumatology at Countess had come back with the impossible question of 'how much is this likely to cost?' How the hell is anyone supposed to know that. but I know why they have asked that - it is because BCUHB as KNOWN TO NOT PAY THEIR BILLS!

I feel like a broken record.

Hi. I feel sorry for you. I really do but your reply to me came across as rude. I was only trying to help. Good luck but I won’t be commenting again.

I am just seriously at the end of my tether and no one seems to be able to read. Hence why I feel so incvisible and why I KNOW I don't matter and am nothing. I have said time and time again and explained that I have NO access to healthcare, so saying 'ask to be referred heere and there'. I can't.


How is this allowed and why is NO ONE bothered?! The last 14, nearly 15 months have been absolute hell and I have no one. I have NO HEALTHCARE.

stiff19 in reply to freddo23

In Dorset at my local hospital two rheumys 🤷‍♀️ You’re supposed to be able to be referred elsewhere but my go will not give the option , they choose . I had words with appointment booking people and said I’m supposed to have a choice and told only the choices the doc gives you. Then when I chose a dermatologist with short wait out of area it was cancelled and I had to go to local . There is no freedom here.


Sorry to hear about your sad and disappointing NHS experiences. You DEFINITELY need a lupus specialist consultant NHS highly experienced medical DOCTOR.


I AM THINKING ABOUT YOUR PLIGHT and it really scares me.

God, the omniscient will take care of you!


It's not my experience of the NHS though, just BCUHB. And frontline staff within BCUHB do an incredible job with the very little they have. Imagine what they could do under proper mangerment, less management and admin focus and more frontline and patient focus which is where it should be.

I cannot fault Countess of Chester. Arrowe Park is the best hospital I have attended. The fracture clinic and SEAL departments, absolutely unreal! The ONLY reason I got into theatre was due the three nurses that had me and talked me through that long walk down that corridor. But it was so important for me to walk in and the nurse that had my left arm knew that.

Aintree Hospital A+E, again cannot fault them. Royal Derby Hospital, now that is different. Consultants and speciality absolutely fantastic (Pulvertaft Hand Clinic), but communication doesn't exist.

It seems the only ones that are appalled and disgusted by whats happened and the state of BCUHB are 'ordinary' people. Didn't want to use that term and its not the right term, please don't be offended, but I mean anyone that is not 'in power'. MPs, Welsh AM, Welsh Gov, BCUHB, Head and Senoir Manager of North Wales Mental Health Team don't give flying monkeys. And these are the people who can actually do something about it!

If you have any advice on how to cope with any of the health issues mentioned, please share. I'm desperate. Had enough of suffering.

When I was really bad with a head to toe rash I found lying in a bath of cool/warm (not hot) water with bicarbonate of soda dissolved in it (about 1 or 2 dessert spoons) helped to soothe the itch. Also drinking camomile tea (hate the stuff) with a teaspoon of honey helped until I got medication and Dermavate cream. Hope this helps relieve the symptoms for you.🙏🏻🤞

Hi I’m really sorry your going through a lot at the moment- can’t give you any advice but hope things get better for you soon xx

Thank you, but there is no way of it getting better. No one gives two hoots. Police said get in touch with mP, they're very good. No he's useless and very silent! But then what else would you expect from Tories. We used to have a very well respected MP up until GE 2019. He helped thousands over the years, ALWAYS replied and ALWAYS helped. Now we have this one who worse than BCUHB. Atleast frontline staff at BCUHB do work and do incredible job. This MP does jack and his wife (well separated) seems to think it's perfectly ok to have friends around for her 40th birthday in lockdown! You couldn't make it up! Welsh AM, Nothing, Health Minister oh hell no.

Who the hell am I supposed to go to for help?!!?

Apparently Human Rights and Equality and Disability Act mean nothing, but what do you expect in Tory rule. I am sick to death of this pandemic being used as an excuse. It has NOTHING to do with the situations I am in and it has NOTHING to do with the mess that is BCUHB.

This is the UK, a development first world country with a national health service. Healthcare, free for all, no discrimination. We have Human Rights. We have Equality and Disability Act. How the hell is this allowed to happen?! I really should take a mertazapine, it works wonders, for both sleep and calming anxiety, but only have 14 left and NO WAY of ordering another prescription. I'm claiming ESA and UC due to being made redundant two weeks after SLE diagnosis, sick note runs out in 10 DAYS. If I don't get one, I lose ESA and I will lose the roof over my head. I know what I will do then, wouldn't even think about it. Been there before at the age of 17, never again.

Thought I'd reached rock bottom many times before now, but no, this further than rock bottom. No one deserves this. I hate this and no one cares. No one will wake up and see what is happening. The state that is BCUHB. No one will help.

I hate this. I seriously hate this. What have I done to deserve all this?

I am so desperate for help. I have no car due to a serious crash, £650 saved up for a car, but I am also utterly terrified at just the thought of getting back behind the wheel and the longer I don't drive, the worse it is getting. I have daily flashbacks of the crash, jump when I'm watching something and a car crash happens, visualise it and re-live it when I'm out for a walk. Due a tax refund but can't get one due to no P60 and apparently need a form from JC, but before lockdown tried that and they didn't have any. MP, surprise, surprise, not doing anything and is completely silent. PIP is going through mandatory reconsideration, about 6 or 7 weeks to go before the 'expect to have a decision within 10 weeks' - a text I received a month after I sent it first class, recorded delivery. If I don't get PIP I am goosed. The backpayment will get me a car!

Have a workplace pension from previous employer, but no idea if you can take it years and years before pension age. That would help hugely!

Money helps solve so many issues. If I could afford it, I would pay private for all medical stuff, but I can't. And just because you pay for it, doesn't mean it's any better. You just get seen a hell of a lot quicker.

I didn't think life would ever get this low. I got through 17. I never thought I would see 25, so been living in borrowed time for a little while. I've survived so much that should've killed me, beaten me. But no, I'm still stuck here.

I could so do with a hug right, especially from niece and nephew. To them I matter.

I hate this life. How much pain and suffering does someone have to go through?!

And wow, my legs are driving me insane with a very itchy and very angry rash. My knees and ankles are now bleeding from scratching so much. Elecon is not helping!

5.46am and I am still awake. If only I could take mertazapine and know that I will still be able to order more. How the hell is this allowed!?

If u have a gov shielding letter you won't need a sick note from ur gp

As the shielding letter states on the back

I don't have a shielding letter because according to the wonderful Public Health Wales I am of no additional risk, despite SLE being diagnosed in Oct 2019, the disease being active, unmonitored and untreated. Not oneds for SLE - not because I don't need to be, but because I have zero access to Rheumatology! Chronic/permanent leukopenia and neutropenia, cardio and respiratory issues, with no answers, since battling pnuemonia and pluerisy in March and April 2019. And all the rest I have mentioned.

Funnily enough, if I lived in Chester I would be listed as shielding!

Seriously does no one care that I am in this position!? Is no one appalled and disgusted? Does no one see the violation of human rights and Equality and Disability Act?!

Why is no one remotely bothered about the situation I am left in and the absolute mess that is BCUHB!? What the hell has to happen for people to wake up?

I have had one hours sleep. How can ANYONE be left in this situation!? And why they hell does no one care?! I seriously am nothing!

Try your welfare right and also ur local council welfare rights will also b able to assist you with your PIP application this is a really hard battle and you could relieve some stress with regards to your pension u can cash them in early but depending how long uve been paying into it the return may b small because ur wanting to release it early ! I wish u luck and a gentle hug 🙏

As I have said, PIP is going through mandatory reconsideration. All I need is DWP to be actually be decent which is far too much to ask for. Citezens Advice have helped me all the way through.

The pension was paying into it for 4 years and I'm not 30. It's with Aviva.

Are you seriously not disgusted at the lack of healthcare, how abamdoned and deaserted I am and the state of BCUHB!?

I am way way WAY beyond the end of my tether and no one is remotely bothered!? As I've said all along, I do not matter. I am clearly invisible and deserve l this. What has to happen for me to get to help!?

Hi Ceri. I understand how you feel but you are definitely not alone. I also have SLE, severe Raynaud’s, angina, an atrophying kidney, only half a thyroid and various other conditions. Although my GP told me to treat myself as high risk, I’ve had no letter at all from anybody regarding my risk level and my 6 monthly appointment with Rheumy slid into 13 months and ended up a phone appointment due to COVID. When I started Hydroxychloroquine years ago I was told I’d be monitored for eyesight etc but I never was. Our hospital (in south of Scotland) has no Lupus specialist at all and I only get to see the Rheumatologist once every 6 months (supposedly) but we do have a Rheumy helpline if I need them during a flare or other concerns. So a lot of us are in the same boat as you.

I’ve found this wonderful forum the best help I’ve ever had! It is just a pity I didn’t know it existed until 7 years after diagnosis! But any queries I’ve had about medication concerns, symptoms or whatever else have been answered quickly on here by people who know, because they experience it themselves. I really feel for you, but don’t feel neglected or alone. That’s the way it is while our NHS is overstretched (even before COVID) but thank goodness we have the advice and support of each other. Take care Ceri.🤗

Thank you for replying and acknowledging.

However my situation is NOT like yours or anyone's as I am NOT on a Rheumatology list. I do not have a rheumatologist. I do have an IPFR form to access one that is "out of area" despite being a hell of a lot closer than every other hospital. But that IPFR form is lost in the air some where with NO ONE doing anything about it because I ha e ZERO access to ANY healthcare which is a complete violation if human rights and I am meant to have extra protection through the Equality and Disability Act 2010 (I have a letter stating this). But guess what, none of that matters.

And NO ONE is remotely bothered about this. Seriously, why the actual hell has to happen for me to get access to primary care whilst is my human right and access to Rheumatology which I so desperately NEED.

As I have already said, I left a voicemail on the adviceline the day I received a letter 9 weeks after the pandemic started from rheumatology at Glan Clwyd. That was a week last Thursday and I am STILL waiting for the call back. It is NOT going to happen.

Where the hell can I go for help? No one is belong me. I have gone to MP, Welsh AM and Health minister all as silent as BCUHB. I have asked for help with all the medical things I have mentioned and NO ONE has offered any help. The rash and itchying is driving me insane.

My experience is no one gives a damn unless it is them in the situation. I would NEVER, absolutely NEVER let ANYONE go through any of this and would NEVER ignore or dismias them.

And COVID-19 is NOTHING to do with ANY of this mess!!!!

I agree COVID 19 is nothing to do with it. I’m so sorry to hear you haven’t been seen by a rheumatologist. So who diagnosed you with SLE? I initially saw my GP with the insanely itchy rash who referred me to a dermatologist who in turn referred me to Rheumatolgy because his tests indicated Lupus although at that point they didn’t know if it was SLE or not. Rheumatology discovered it was SLE. There are one or two others on here who are suffering a lot too and have been for a long time and haven’t been diagnosed with anything which is dreadful. You should have Dermavate cream for the rash and possibly be on steroids as I have been in a flare. So I think you really need to contact your GP if you don’t have a specialist on board.

Let’s hope the millions of pounds Lt Tom Moore raised for NHS go towards improving this situation. But that will take time. In the meantime please contact your GP or even NHS 24 if it can’t wait until tomorrow.

Best of luck and best wishes. Let us know how you get on. 🤗😘

Sorry, but I am SERIOUSLY starting to lose patience. I HAVE NO GP!!

Due to being removed from GP patient list by GP practice manger a few hours after I had the police at my door at half 1 in the onring in concern for me welfare, with the advice to seek help from GP. I was still in shock and injured froma serious car crash, hadn't long had stitcjes removed from minor surgery in shoulder. A few days after aa very scary neurology appt where migraines and PPPD was diagnosed. Struggled and fought like hell to get B12 injections which I so desperately needed - and a few after having them loads of benefits! Including better clarity. This was also at the beginning of lockdown when there was mass fear, panic and hysteria - which I did not join in at all and still won't.

If I get the virus it will most likely kill me and I am ok with that.

I have said time and time again I have no access to healthcare. Read the OP.

Constantly talking to brickwalls. MPs, Welsh AM and Health Minister don't read either.

And it is NOT AN EMERGENCY - I NEED - DESPERATELY - access to primary care at GP level. Which is my legal right and is against human right be completely without a GP and am also 'protected' with Equality and Disability Act 2010 (have a letter as proof). But none of this matters as this is Tory UK!

I DESPERATELY NEED HELP! I NEED SOMONE TO LISTEN & BE BY MY SIDE AND HELP ME. am way, way, WAY beyond the end of my tether and as brilliant as the police are, they CANNOT help as they are not GPs!!

Why the hell do I even bother! I joined Lupus UK and North Wales Group with reason - to help and so NO ONE suffers like I have and still do. There is a hell of a lot of work to do. But no one seems to be able to read, no one is with me. I DESPERATELY need help and support AND healthcare. I esperately need to take mertazapine, but can't as I only have 14 tablets left and NO WAY oof ordering another presciption DUE TO NO ACCESS TO HEALTHCARE.

And no one cares. No one understands and no one reads.

As I have said ALL alonf. I KNOW I am NOTHING. I KNOW I am invisible. I KNOW I don't matetr. And I KNOW I am better off dead. The only ones that would miss me are my niece and nephew adn sisters dogs and I am desperate to see them all, be with them, fuss the dogs, hug and spend time with niece and nephew and actual feel like I matter. Because to them I do matter.

I am going out of my mind STRANDED in this village. I have no car due to my beloved Kia Pro Cee'd that I worked so hard or was written off in a serious crash in the overaking lane of a busy dual carriageway toward the end of rush hour and a WEEK BEFORE LOCKDOWN.

I have £650 saved for a car so far. I am due a £640 tax refund but cannot get it because I have no P60 and no way of getting one the new MP is utterly useless. And it says I need a form from JC to get it when that is NOT the case as I tried this before lockdown and before the end of the tax year and JC don't have the forms. They had no idea about it. And the local JC is decent!

Hey Ceri, what's up? You seemed so much better recently and much more positive, so I'm surprised to see you out of control today. Reading through your more recent posts, I wonder if it's because you've been taking your mertazapine indiscriminately? You really MUST take it as prescribed. I know you only have a few left, but you must be able to contact the prescribing Consultant's secretary to request another prescription. I also wonder why this is not on repeat prescription? I strongly advise you to sign up for a GP at another practice - they can't refuse such a request. So, please do it ASAP.

Many of us here have shown that we care, but there's only so much we can do from a distance. Please let us know how you get on.

*Long, but PLEASE read this, I do explain things and I fed of repeating myself constantly*

Hi Megs, and yes mertazapine makes a huge difference! And I am someone who has always been against medicating mental health and find the right way is to get to the root cause of the issues and work through, and lifestyle chances. Had side effects from citalopram, last May and June, so wa moved on to sertraline in July. Did absolutely nothing. Canged to mertazapine beginning of March. Brillinat and instant! For the first time in years I slept and was asleep within the hour and due to not taking it due not being able to order it in April, I noticed the difference near enough instantly of not taking it. No sleep, nowhere near as calm, anxiety shooting through the roof, lack of clrity, always on eedge. So yes mertazapine makes a massive difference! But when I can't order any more what the hell am I supposed to do. It is on repeat and it was GP that gave it me, no consultant. So seriously have absolutely no way of getting it.

I am also sick to death of havig to constantly repeat myself, constantly talking to brickwalls. I am sick to death of being alone, trapped and NO ONE on my side. We are told there is always help. This is a complete and utter lie. MP, Welsh AM, Health Minister all silent and ignore calls for help. This would not have happened with the very well respected MP we had previously. But what can you expect from a tory MP. He had the opportunity to prove to me that indivdual MPs make a diffrence, like the previous labour MP did. He has failed massively and no one - and I mean no one - in the the area has a good word to say about him. Unsurprisingly, he has towed the tory line and rallied around and thinks DC acted 'reasonably and responsibly'. Clearly not!

No one understands the seriousness of the sitations I am in. No one cares. No one is willing to help. No one is standing by my side helping me through. As always, all I have is my own two feet. This life is excrutiatingly painful and so cruel.

How can someone be in crisis, go through a mental breakdonwna and be completely abandonded?

Why is no one bothered that my human rights are being violated. Even with being removed from GP patient list, the rules are I MUST NEVER be without GP care. Oh and here I am. I even have extra protection with the Equality and Disability Act 2010, but all this means nothing in Tory land. I am nothing. I am not a millionaire. I am unemployed through no fault of my own, made redundant two weeks after SLE diagnosis and can't work until health (SLE) is under control - which can't happen with NO HEALTHCARE.

I am sick to death of banging my head against a brick wall. Sorry to say it, but I am also sick of people moaning that they 'only have phone consultations'. You have healthcare, you are being treated and you have access to the correct care for SLE. Be grateful!! I would JUMP at that chance.

How can anyone be allowed to go through so much and have no one and no healthcare. This is the UK for godsake. All the things I do for people. ALWAYS helping - no matter the day or time. I will NEVER let ANYONE go through hell alone.

I just need someone to not give up on me.

It's so painful. I am begging, pleading for help. Where the hell can I go for help!? I would actually take being hospitalised to get the help I need - just as long as it is in nothing to do with BCUHB. There is NO SUCH THING AS MENTAL HEALTH HELP AND SUPPORT IN NORTH WALES - AND THE HEAD AND SENOIR MANAGER DO NOT CARE EITHER!

What the hell has to happened before ANYONE does SOMETHING about the dire straights BCUHB and North Wales healthcare is in!? If it was the MP or a loved one of his that was having issues, he'd be VERY quick to react. But because it is not him, he is not being affected in any way, he doen't care.

I am someone who is big enough to admit I have made mistakes and I truly am sorry, but that is not good enough. I well and truly, 100% take the warning I got from GP practice manager in March, or early April whenever it was. I was also in crisis, going through a mental breakdown, having a hell of a time trying to access healthcare with BCUHB, still in shock and injured from a serious crash. No one should be expected to act normal in all that and at a time of global pandemic, when news was changing by the hour, NHS serivices the same and there was mass hysteria, fear and panic. I absolutely take that warning. But have NO IDEA why I was removed. The warning letter said if I wanted to discuss it, I could talk with her (the practice manager) on Friday when I was there for the next B12 injection. The nurse denied me this and dismissed it straight away, so shown her he letter and she was VERY taken aback. She was busy, which was fair enough, so was decided when I was there for the next B12 injection. I was sat there waiting in the waiting room, bearing in mind this was only a few hours after I had the police at my door in concern for my welfare t half one in the morning with the advice to seek help from GP, a very stressed practice manager came out and handed me the letter removing me from the list. NOTHING had happened since getting the warning letter. I was never given the second chance that I was supposed to have and it has NEVER been explained to me. It is also VERY unprofessional to do that with all of what was going on in my life and globally. Under the Equality Act, I am entitled for it to be explained to me. I have been denied that. Now, I KNOW the practice manger was massively stressed, not only due to the ever changing situation and changing of GP services, but also because she was changing the practice over from being partner run to being run by BCUHB. A hugely stressful task in itself and was working round the clock to make sure she had GPs for the date of the changeover - which she did. That stress alone is enough to send into a breakdown! I see why she was so stressed and understand it. But that doesn't mean she should take it out on me. So much for a 'duty of care'! The practice manager has just done what everyone does, toss me to one side for someone else to deal with. Why? Because I am nothing and am not worthy of help!

She also removed me from the GP list and this was AGAINST THE GPs WISHES. The decent GP there who is an absolute credit to the surgery and BCUHB, she has helped me far more with my mental health than ANYONE else withn BCUHB and North Wales Mental Health Team. The GP has said all along that is perfectly happy to still treat me and also said she would keep an eye on kidney and liver function whilst I have no access to rheumatology.

I cannot register elsewhere as I am STRANDED in the village I live in. I can travel 3 miles 3 times a day, Mon-Fri (same town as the GP practice. I have NO CAR due to serious car crash. Very, very, very limited public transport through this village at the best of times, let alone in a pandemic! I have ZERO trust in ANYONE, let alone anyone in the medical field. If I trust a healthcare professional, it is a HUGE compliment I trust, that GP, she has no problem with me, I have no problem with her and she has said she is willing to treat me.

Ther is a GP surgery that I looked at 3 miles in the opposite direction but has TERRIBLE reviews, they don't answer the phone and booking an appt is impossible. The GP surgery I attended has a brilliant 'open access' where if you arrive before 10am (now phone), you will be seen by a GP that morning (or now, phone consultation). Brilliant system and a way to access GP care! I do not think it is unreasonable at all, that whilst this pandemic is going on, and due extenuating circumstances, for the GP practice manager to allow me to just have access to that GP and via phonecall, so I can order prescriptions and get support. Or temporarily for 3 months. I am someone who can see I have done wrong, can admit is and am genuinly sorry for it. yet, I am villified and abandoned for it. And NO second chance given. Yet, there is a certain someone, very high profile, that has done A LOT of wrong, lied about it, can't admit his mistakes, doesn't regret anything and apparently acted 'reasonably and responsibly' AND has his tory friends rallying around him. He gets away scott free, keeps his job and is given another chance. How is that fair?? Atleast I am the bigger person and can admit my mistakes!

Again, why is NO ONE bother about the very clear violation of human rights and complete disregard to Equality and Disability Act 2010?

I have a sick note that runs out in ONE WEEK. I need another one to keep claiming ESA and UC. I am legally allowed to claim them both and have legitimate reasons to. If I lose ESA, I lose the roof over my head. I was in that situation at 17, two and a half weeks after my dads inquest. Never again will I go there. I know EXACTLY what I woud do and I wouldn't even think about it.

Again, I ask, how is it ok for me to be in this situation!? WHY is NO ONE doing anything!? Not just for me, but for the state of BCUHB!? NO ONE CARES!!

Seen as how everywhere is doing telephone consultations now do you not think it’s worth signing up with that other GP practice over the phone? They might let you send in photo ID etc if you explain your situation and they are encouraging people not to go to surgery anyway. Your notes would be transferred pretty quickly. They might have bad reviews but at least you will have some access to healthcare that you need and would be able to get your repeat prescription which will help you tremendously. I’m not sure if they will refer to rheumatology at the moment anyway but they may have started up doing it again. I know they hadn’t last month as I asked for neurology referral to help better manage my migraines but they weren’t doing referrals at that time, but this may have changed now. I think that’s your only viable option at the moment.

I can't get there for a start! And do you really think they would appreciate a very complicated new patient that involved a hell of a lot of running around, checking over and trying to talk to the brickwalls that is BCUHB? Plus, in this pandemic when GP are doing nothing but phone consultations?!

I have ZERO trust. I cannot trust. I cannot and will not interact with a new heathcare professional within BCUHB. They have had far too many chances and I have been sugbjected to so many failures - and am apparently supposed to be perfectly ok with it all!

Not being removed from GP list would've helped as then, even without transport, I could've just ridden this pandemic and lockdown out.

I really feel for youu for the migraines. I suffer too and haven't found anything that helps other than arkened room and curling up/lying on the sofa riding it out. Hope you do get some relief, they are debiliatating.

Try them you never know, like I said they may accept you over the phone without having to go in to register with this going on. It’s worth a try. Other than moving to another area this is the only option.

Hi Ceri. Many people on this site care and we've tried to support you. Just look at the very many replies.

OK, a bit of tough love here - you MUST phone your ex-GP surgery ASAP and plead your case, lack of drugs, lack of care etc AND apologise for any wrong you may have done. DON'T get angry, apologise and humbly ask for their help. It's the best way forward to get you properly medicated and gain some sort of stability.

Please let us know how you get on.

I have thought about doing this over the weeks, but didn't want to add fuel to the fire. Hence, going through offical channels instead - but talking to brickwalls as MP is useless!

And I agree with what you are saying, completely, it just seems that none of that matters within BCUHB. That stability of having access to order repeat prescriptions, be able to have phone consulation in reagrds to health in general. Will call dermatologist secretary in the morning though, because the rash has ot so bad over the weekend. She said she was putting me in for a face to face in August - that's when she's hoping things are resuming to some sort of normailty, but obviously this is entrily dependant on whatever happens with the pandemic.

I will take mertazapine tonight as I do need sleep. And it really does help.

I know people on here care, I just get fed up of repeating myself and when I have clearly already explained something, it winds me up that I have to repeat myself, but I have been dealing with the brickwalls that is the MP, Welsh AM, Health minister and their teams. Atleast BCUHB have a little credibility because the frontline do an incredible job with the very little that they have.

They probably won’t take her on again and she’s no doubt already tried to speak with them. Having worked in a GP surgery myself and witnessing it they basically blacklist you. The best thing you can do now Ceri in order to move forward with this is forget about your old GP and join that other practice over the phone and get a repeat prescription delivered. Unfortunately you are not in a position to be picky. Can’t really say you’ve absolutely no access when you aren’t willing to join another one. Help yourself by doing this Ceri.

I don't think you quite understand how complicated my health situation is and how much I do not trust - ANYONE.

This was all against the GPs wishes, she is still willing to treat me.

Police did say to direct mail her, but haven't as I don't want to add fuel to the fire.

Def bite the bullet and try with this Ceri. Reach out to that GP, she may have a sway over the practice manager. You have absolutely nothing to lose by doing this. Being proactive with this will help you. I’m really am truly sorry you are going through all this, it’s just awful.

I also hate new places and new envirnoments. Not remotely comfortably in them. Hence the referral to see if I ahve autism, but, guess what, North Wwales IAS have also messed that up too. North Wales is beautiful, just don't expect healthcare.

How is it fair that I am treated this way and the GP practice manager gets away with treating me like she has - and against the wishes of GP!

The only person I am a danger to is myself. I don't think anyone truly appreciates the pain, suffering, loss and devastation. The sheer toll that the past 14 months, particularly last 6 months, has taken on me, let alone the years gone by. I have been through enough. Suffered enough. Endured enough. Enough.

Help myself? Do you realise how much I have had to dig so, so deep to pull myself up. I have been on my knees, begging, pleading for help. Begging pleading, for te end. Begging, pleading for the pain to finally end. That takes a hell of a lot. I have been deeper than rock bottom. I thought that was being the age of 17.

It is time I had help. I have helped myself. I have done it all alone. You can't carry this all alone. You can't take on the weight of the world alone. We all need help and support.

Listen to the song Weight Of the World by Citezen Soldier. It says it all.

A song that means a huge amount ot me is The Light by Disturbed. First heard it Oct 2016 and I felt it then. It wasn't until 2018 that I truly understood it. Ihave lived through. But now, I am further down than I have ever been.

I have carried on through everyone - alone and abandoned. Nowhere to turn, unable to escape, unable to go to my hapy place, not just because of lockdown, but because I have no car, no escape from the poor and difficult living situation. If that isn't strength, I don't know what is. I have been through more than most. Been through things that would've killed most people. But no, I must still suffer as I appear strong, but am so weak. This life is here to punish me, for what I do not know. What have I done to deserve so much pain and suffering. This is not to make me strong, this is to amek me weak and die in pain. It's excrutiating.

Begging, pleading for help and get none. Never should anyone go through any of this. I cannot and will not talk to any new healthcare professional within BCUHB. I will stick with those I trust, that one GP, neurologist (Liverpool Walton Centre) and dermatologist.

BCHUB is there to kill, not heal and save.

And thoroughout all of this, I have still done my college work and am one of only two people that has completed all of their work.

MEGS53 I want to say thank you for recognising what's causing me to fly and for managing to calm me down by doing that and not dismissing anything I've said. So thank you. Also, thank you Littlemisssunshine87

Sorry Ceri I didn’t mean help yourself in that way I really do appreciate how much you have been through and done to help yourself already. I just meant that the GP surgeries won’t reach out to you unfortunately even though it would be really helpful, so that’s something you will have to do yourself to join another or try speaking to your old one again. You’d be surprised who’s really in charge of these practices. The GP has a huge say depending on seniority. It sounds like such a battle and hard life you have been through and you deserve to get the help you need. My heart really breaks for you. I wish I could help you more in the way you need x

You helped a lot. You've read what I have put and understood, not dismissed it and not just picked up on the minor things or things that are already in hand. Thank you and i have taken mertazapine, so should be asleep soon. Really do hope you get somewhere with migraines. If you do find something that works, please pass it on 🙂

Thanks Ceri, I hope you manage to get a good sleep in. I’m hoping to try Botox or the newer injection they’ve just approved whenever I eventually can be referred. So will keep you updated on that. You do the same as well and keep us posted. Night night and take care x

I hope you do get access to the botox injection. I used to work with someone who has them (after a long time of fighting to get the treatment) and she's had great success with it. Hvae just given an update and the other night I took mertazapine and was asleep within a few mins, certainly within half an hour - brilliant stuff. And yes, a lot calmer, too. Hope you don't have to wait too long for the referral, good luck with it all x

Hi Ceri have a look at LDN research trust

Hi Ceri I am not sure if this will be of any use to you but at this frustrating and confusing time this website with information for your conditions and intolerances could be your lightbulb moment.

Wishing you better health and more positive future

Omg Ceri-NorthWales I know you mentioned a while back about crisis and no GP.. I'm not sure what you've tried but some possible suggestions

Have you phoned the GP surgery asking for a consultation with the GP you trust.. if receptionist etc don't allow that can you access getting to an A&E or out of hours service ... claim mental health crisis if necessary, and ask for anyone "blocking you" can you please suggest how I can get my prescription of medication that is essential

Another thought have you a phone number for your local council .. probably need social services or welfare rights to help or sign post you to an official employed by local council to advocate on your behalf

With the tax there's an online way of contacting tax ... government gateway type thing I'll try finding the link as that way might be an option to get the tax refund without actually needing the P60 ... only suggesting that as last year I never got my ESA tax thing through post but it didn't matter because I could register online and then tax themselves sorted things out without me needing to post anything

You've so much going on. I really feel for you. Sending gentle hugs and I hope you can find ways to sleep and rest as much as possible

Hey Fab :) I've just given a little update, so won't repeat myself, but fingers crossed.

Doesn't matter if you claim mental health crisis within BCUHB, mental health help and support only exists by name. I have sat in a+e twice at Glan Clwyd for those reasons an nothing. Earlier this year, I did the same with Countess a+e, but also did have a reaction to meds so was an emergency anyway. All they can do is refer back to North Walse Mental Health Team, so again, useless.

With the tax refund, I have tried going through the website (last week) and it came back that I need a form from job centre to complete the claim. But in January after going to CAB to to ask how I get the tax refund they said I do need to get a form from JC. They didn't have a clue about it and have no forms for it and know nothing about claiming tax refunds from the there - and they are very good at the local JC! I assumed there were issues as it was then in the current tax year. It is now after the 2019/20 tax year, so should be easy, but it appears not. Still waiting on MP response. Raining £50 notes will happen before I get a reply from MP!

Thank you for your reply and yes, thankfully I ahve had some sleep. I ahve taken mertazapine each night since I made this post and it seriously works. sleeping and much calmer. Hope you're doing ok, none of us are having an easy time and all of us are affected by this situation x

Government link for tax refund... it's definitely worth a try. I think I needed my National insurance number and to register personal details / confirm some kind of "government gateway ID" the first time I used the service ... again a local council employee can possibly help if you cannot do it yourself


Oh and keep leaving basic message on the helpline number asking the rheumatology nurse to phone you back urgently as you need an urgent consultation with the Lupus consultant. Not sleeping can actually be part of SLE, early in my diagnosis I had a very bad mental health crisis hypomania which is now thought to be one symptom of how the neuropsychiatric SLE (NPSLE) affects me ... not being able to sleep is always my first warning sign of hypomania. Anything that flares up my Lupus eg stress, not being careful in the sun, tends to trigger the start of NPSLE.

Your bound to be very stressed as no one on the medical side seems to be listening to you or helping you. I do hope that you find someone who's supportive

Bit of an update. MP still silent, but did get in touch with outpatient manager at Glan Clwyd who has helped me loads with all the failures than have gone on. She is brilliant and always helps - and she works so, so hard!

Have taken mertazapine every night since I made this post. It seriously works! I cannot apologise enough. I jus lose it and I hate myself for it and with so much stress, talking to so many brickwalls, everything just explodes. No exercise, gym or spin to get it all out, serious cabin fever stuck in and in this village. I know I am not alone hhere, I am craving human contact. I so miss spin, not just for the exercise release, but for the music, the atmosphere, the people, the instructors, having a laugh, conversation. And I so need to see my niece and nephew and have cuddels. Niece text me this morning from my sisters phone saying she's really missing me and loves me - yes, I teared up!

Phoned NHS 111 last night out of desperation to get prescriptions. Spoke with a nurse for about an hour. She was brilliant and managed to calm me down and I must've said thank you atleast 10 times for that! She told me to phone GP out of hours to get prescription, she's sending info over to former GP practice and said she's contact social services - nervous, not sure what to expect. But its help and I need it!

GP out of hours can't give prescriptions because he can't access my records as i'm not with a GP atm. He especially can't prescribe mertazpine without seeing notes - which I totally get and was surprised when nurse said I could get prescription from GP out of hours, but there was hope. He is sending something to former GP praactice in regards to the sitution I am in and said I should phone the surgery as they should still issue precriptions as they have a duty of care and said GP can overule practice manager.

I emailed all this to outpatients manager who said she was going to phone former GP practice to talk with the brilliant GP today.

Out patient manager phoned me not too long ago:

- She has phoned and emailed loads of people high up in BCUHB etc to try to sort the situation and have some kind of solution. As she agrees, all I'm asking for is temporary access to phone consulations with that GP so I can still have prescriptions, a little support and get another sicknote for ESA etc. Outpatient manager agrees that what I'm asking is reasonable.

- There is a meeting tomorrow where they will decide if it is ok for me to be re-registered with former GP practe and have access to that GP for phone consulations as long as I am impecably behaved - which I will be. It is this situation that is causing so much anxiety and fear. She is hopeful of a good outcome andwill phone me Friday afternoon with the update. So finger crossed 🤞 very nervous and anxious over this, but it is a step forward

- The IPFR to access rheumatology care at Countess has been aproved! 😁🎉 Yes!!! Access to rheumatology care at long last, with full treatment options available and as I am now having care within NHS England, I can have access to centre of excellence and lupus specialist if needed. Such a relief!

This doesn't mean that the situation in Wales, particularly within BCUHB is ok and there is a hell of a lot of work to do and will be doing everything I can to try and get someone to sort through it! It is not good enough.

That’s amazing news Ceri I’m so pleased things are starting to move in the right direction. Everything crossed for a positive outcome from the GP 🙌 please keep us posted with that. Hopefully all will be well and they will come out of it with a better understanding of mental health as well.

Sounds like you spoke to a very lovely nurse.

Just have to say I used to LOVE spin class as well haha I used to go 3 times a week I loved it, I miss it so much now, I developed exercise intolerance and light sensitivity to artificial light with all this so I can’t do it anymore. But I do yoga at home on YouTube and that’s been such a help physically and mentally, if you have access to that and a bit of space to do it in your home I def recommend it 🧘🏼‍♀️ I follow a lovely lady called Boho Beautiful, there’s also yoga with Adrienne which is popular as well xx

That's good at last for you some positive steps forward

Well done, Ceri! This is a huge step forward. Please let us know what happens on Friday. I'm sending huge virtual hugs your way. xxx

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