I am in crisis. I need help. PLease help. Please take all of this stress and contact people on my behalf. I am getting nowhere. GP won't give me a phone consultation tomorrow, despite being their tomorrow. I have to phone first thing to be put on the list. Why can they not just do this now?
They have a 5 page letter there from some doctor who I have never heard of and have never seen, it apparently mentions rheumatology, but no idea what. They will not give me a copy. This has to go through their admin team, which take 3 weeks to do anything and that is BEFORE the pandemic, let alone now. When I was with GP filling in IPFR form on March 13th, she just printed the letters that I didn't have.
If I saw a GP face to face, this would help, but they are only seeing respiratory patients. No idea if that counts as me as nothing diagnosis, but a 13 month history of breathing issues, breathlessness and chest pain. Respiratory medicine referral in October 2019, hear nothing. GP put me forward for their 'lung function' tests - its a big word beginning with 'S'. This was 3 or 4 weeks prior to pandemic taking hold, now not happening.Trying to get hold of neurology, from Walton Centre. Was seen at Glan Clwyd. Walton Centre secretaries tell me to phone, Glan Clwyd secreataries - who do not answer phones, answer voicemails or get back to you - and this was BEFORE the pandemic. I have been waiting on a callback from them for a week and a half. No joy. I eventually get through, she refuses to speak with me or give basic information.
Walton Centre secretary said I have been discharged, which I am shocked and very upset about. I FINALLY have decent healthcare, plus he has diagnosed PPPD, ordered vestibular rehab, ordered brain MRI (which needs a face to face afterwards) and orgainising mental health support with HIS team, not north wales mental health team. I have been told by walton Centre the clinic letter from March 20th has now been written up. I have not received this and was asking when or if it had been sent out yet.
Glan Clwyd secretary refusing to answer the question as to whether the letter has been written up, if it has been sent out and why or if it says 'discharged'. He is the only person who is decent and have found that cares. I am not being discharged by him. And I cannot be discharged by him from all of the above.
I have a 49 page document detailing the health failures that I have been subjected to. I have a further 35 pages document with all mental stuff. I have another document with ESure related stuff. Next up, UC and PIP in one document and then one final document for redundancy related stuff. I am mnore than happy to send these to ANYONE who is willing to help. Please.
Once all of this is together I am sending via email to local MP and any people I can. Any help on who please tell me. I am not clued up on who has what job.
I NEED help. I NEED someone to be with me, take some of this off me and get some sense out of anyone from BCUHB - good luck! I have tried and tried and tried. I am tired. I am done. I am deflated. I am upset. I NEED HELP. PLEASE!!
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Ceri-NorthWales
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I am so very sorry that you are suffering Ceri. I wish I could help you. My best advice would be to ring your surgery tomorrow get a telephone appointment with a GP and send them by email a copy of what you have written here so they understand the issues before they call you. I wish you the very best xx
Thank you. I have no email address for them - you are expecting far too much from BCUHB and NHS Wales! Apart from that, whenever I try to show them something (GP surgery, GP practice manager, GPs) I am shut own in flames and told 'NO! I don't want to hear it! I don't want to see it!' They are right, everyone else is wrong. That's as simple as it is.
Did and found email of the practice manager and have c+p to her. She is not in until tomorrow anyway. She wasn't in today. I need help. Desperately and am having doors slammed in my face. What is so difficult about getting healthcare or people looking on the system and giving me the info Infront of them!? Why is it so difficult to book me in for a phone consultation the next day. Why do they have to EVERYTHING so difficult!? The simplest of things are inpossible because of red tape. Does anyone else have these issues?
I think at this time everything is difficult Ceri but your practice should respond to you. If you have no luck then cal 111 and explain to them that you are not getting the help you need. I feel your frustration and I do understand it but at such a difficult time the pressure on the NHS is immense. Good luck xx
I have, that is why I explained in the OP that I have documents for each and working through each one. As there is so much hell going on, it takes a lot of time, my health is in pieces, fatigue is all over the place and brain fog.... Oh wow, whole other level! I need someone to sit with me and go through it, help me sort through it, help me with the documents, help me document everything and help me compile a list of MPs and ministers I need to send it all too.
I am fed up of people asking if I have done the basics - of course I have!!!
I am in crisis and having a breakdown. I have NO ONE. I know I don't matter and as each hour of each day goes on, this is blatantly obvious and constantly reinforced.
Please help me. Yes, i have down the basics - and more!! Far, far more!!
I have already said, ANYONE is welcome to read the documents. I will send them through. I am desperate. Please, please, please help me
Just had the police at my door!! I hate this life!
I NEED some help why can I not get any? I NEED someone to be with me to sort through atleast some of this crap and come with me to B12 injection for support.
People have no idea how lucky they are to be able to phone rheumatology department, GP or other professional for help. I cannot do that. Not because I won't. But because I have no rheumatologist. GPs won't listen and receptionists won't book a call with me to speak to a GP. And if I do speak to a GP, I am shit down in flames and shut off. Not allowed to speak, ask questions, get reassurances. Nothing.
We all hear you. It’s not that people here don’t want to help - it’s because we can’t. We are all struggling to a greater or lesser degree - trying to help or be helped and not being able to access help one way or another.
I realise you need kindness with practical help but we here can only offer kindness. We don’t live nearby and even if we did we might be in similar dire straights as you are.
The help you ask for has to be local and come from a different non cyber community. Helping you organise your thoughts for a formal complaint about your lack of healthcare isn’t something other sick people here are able to do because we struggle similarly. I realise you think everyone here is luckier than you just now but in reality, reading posts here at 5am in pain, I don’t think anyone feels that lucky.
And no one knows what else to suggest because this is an international online patient community, not a local one with people who can offer you what you’re asking for. From what I can see from reading your other posts and appeals many have tried.
You need more support than we can give - there is the will here but sadly not the way. So sorry Ceri-NorthWales.
I really hope you somehow get the practical help you desperately need. Meanwhile all i can offer you is 🤗 through cyber space. I know it’s not what you’re asking for or expecting - but it’s all I have to give.
I am currently sat outside GP surgery now, sat in the nice garden bit and refusing to leave until I speak with practice manager. The receptionist actually spoke to me like a human being and not as if I was nothing. I have sincerely thanked her for this as this is so rare within BCUHB. And no, I am not exagerating in any way. I have even told them to ring the police, which is what they threaten, phone them. They are ones at 2am said I need to get in touch with GP - yes, because I haven't tried that!! They have a duty of care and since the announcement that they are to be run by BCUHB, their duty of care has been lacking/non-existent.
I've read some history books - and at times like this - human rights do erode to nothing. Society has been turned upside down and if you're poor and have mental health / neurological issues - you will be at the bottom of the line. You're absolutely not alone with this. But it's something you have to wrap you're brain around very quickly. You must stop loosing neuro energy contemplating you're own status and the unfairness of it - and start thinking about you're best survival strategy. You have to do it yourself. This is how it is.
Learn how to suck up to the people you hate. I learnt this lesson a few years ago with Doctors . It twists the soul but to survive you have to swallow you're dignity and be nice to authority - and unfortunately Doctors are the ultimate power brokers right now.
Try and calm that natural instinct to fight. Just work on that one thing.
I'm not very rich myself - and have an overwhelming urge to drown all Doctors in a shallow puddle - but instead I'm quite deliberately ' complementing them on their hard work and bravery right now ' saying extra thank you ('s ) for their effort......a glimmer of this is genuine -because the Doctors I manage to see are utterly terrified and in reality don't have to turn up ( a lot of them are staying at home ) but these ones have turned up and I admire them for it. But my behaviour towards them is also survival strategy. They're already alarmed - which is a new emotion for many of them - so I'm much gentler with them than usual. I let my rage out when I get home.
I have some brain involvement myself - and I'm on my own too. I know how disconcerting and discombobulating this is - but you have to use what resources you have and can access to survive.
Prioritise slowing you're racing mind down and containing those emotions.
*Start pretending to be nice*
If you start loosing it - remind the people you're talking to that you have Neuro problems and can't control it.
Try distracting yourself with another thought if you find you can't control you're anger. ( like visualising something funny - totally separate from the situation ) visualising naked Doctors and Policepeople painted purple. Count backwards from ten etc. - Anything.
In the USA African Americans are dying at a statistically higher rate from Covid19 than white people. They've always died at a higher rate from treatable illness there. It's unfair but it's a fact. All countries discriminate in their own way and the UK would not be exempt from this.
Try and accept this situation and you're situation and calmly - and strategically- find your way through.
Sorry to read about your situation. It must be very difficult for you. Have you tried getting an advocate? Maybe, in order to assist in alleviating all of this stress, they could communicate with the relevant people on your behalf. Reason being, it sounds like the more you communicate with them, the more it frustrates you and of course, that will send you into a state of panic. anxiety and a sense of dread.
At least, by having an advocate, you will not only have someone looking out for you but they can ensure that things are being done properly.
You can contact the citizens advice bureau and they would be able to signpost you to some local organisations that offer this service. They are a fountain of information and are very useful. You can do a Google search for their contact number. There maybe a long wait on the phone but be patient and you will eventually get through. Summarise in bullet points what has happened so far but please make sure you remember about asking them for information regarding any advocate organisations within your area.
As mentioned above, as this is an online forum where people have a myriad of autoimmune related issues, we can only do so much but I know, for sure, that an advocate will be your saving grace. They will be able to provide valuable one to one support and this is something that you most definitely need and deserve right now.
May the good Lord bless you dear one, as you call out for peace. May the many here who hear you, comfort your heavy heart. May our love to support you, help you find your way. Can you try and find your peace, that is behind your conditions, that plage you, and many. Settle your mind, hold on to what you believe. Know there are forces at hand, that will come and help, be patient, we all are in corners, backed up against the walls, we here your plees, we are with you, best we all can. There is a plan, there is a light, it will come. May the peace that serpasses all understanding be washed over you Ceri, May you calm the fears into positive powers, and know I pray for you Ceri. For you are not alone, we are here, together. my greatest prayers, peace, and blessings to you Ceri, please accept this as a gesture from my heart, and from all...Xxxx thestormy sunshine💖
Hi am so sorry your being ignored and getting nowhere at all. I totally understand how frustrating that can be. I get nowhere with my drs and 6 other hospital specialists so have stopped going altogether. At the moment we are all being ignored it’s a miracle anyone gets an appointment or any help at all. This has always been this way and I don’t see a change any time soon. At the moment they justify this by saying that they are over whelmed by the corona virus. What was their excuse before this. All my hospital appointments have been cancelled then they ring you and get you off their lists as they are needed for corona care. It’s a great way to bring the NHS waiting and patient lists down to an all time low. I bet they are rubbing their hands with glee. The NHS and all medical appointments are a mix of the rare good and at the most bad. It’s a complete shambles. I really feel for you and the only thing I can suggest is getting someone in authority to write on your behalf as they have to reply to the letter. I had just got a representative from age uk a lovely lady who was going to visit me in my home and help me write a type written letter to be sent to every department plus my drs too when along came the virus and it’s all got put on hold but I think they would probably do something over the phone it’s my plan B. We sadly have to grovel to the drs and say how wonderful they are and what a great job they are doing but the sad fact is they can’t be bothered and don’t want to know. We are being denied the most basic of medical care. I find that drs and reception staff can be very negative and judgemental and once they see us in that light it’s quite difficult to get them to do anything for us. I wish things were different for you as I feel your suffering and it’s so sad as you deserve the right to proper medical care. The only way I ever got that level of care was when I paid for it privately then of course they are usually but not always that good. The medical care needs a shake up. Sadly it’s the attitude of the medical profession and the staff that brings us down leaving us feeling so demoralised more than the lack of medical help. I wish one day everyone on this site got the treatment that they so rightly deserved. I wish you well and pray that you get the help you need to end your suffering I really do. Just remember once you get an appointment stay calm and slowly go over your concerns but be very careful how you word things as I have found that drs and medical staff believe that they cannot be questioned as their word is law and that law should never be broken. I am always very polite when I go but even then it’s impossible to get past their judgmental and conceited way of thinking. Try being extra nice and see if that helps. I always say thank you so much for getting me an appointment I really do appreciate it and I do. When in reality you feel like saying god how many were on this phone line before I got to you as I was waiting an hour. Oh dear me what I didn’t get an appointment as they have all gone what a shame. Never mind can I get an appointment tomorrow or within the next few days perhaps, no you say there’s no appointments for the next few weeks. What do you suggest I do ring back of course it’s not a problem have a lovely day. You then put the phone down and scream. Well you have somehow to make light of it all or you will go insane. I too was at your level of distress last year then I just thought this is making me ill and I nearly had a nervous break down from the stress. You somehow have to get someone on your side and praise the NHS and every one of its staff 24/7. It’s all they want to hear. Do they have an age Uk nearby if so call them to see if they can help or if they have a Tele number for anyone who can. Let us know how you get on lass. Take care and chin up and I am hoping and praying you get the medical care which you so rightly deserve. J😀
Oh Ceri-NorthWales I hope you are managing to get some rest and sleep. Even without the covid-19 pandemic emergency, its often extremely difficult getting really good support and help. I will follow you on Health unlocked and try read through any posts you've made to try "get up to speed" with issues you have. I'm in England and I've a feeling Wales may not have "as good services" so unfortunately this could be having an impact too
Firstly have you friends and family around who can help you with basics, don't be afraid to call someone and say if you're struggling. MIND are also very good for information and support
Plus are you eating, sleeping, taking any medication etc, and using sunscreen etc if you go outdoors ... All these things are the first basics to "control", and often especially in crisis we can forget or get bad at self care. I myself often get poor at self care especially when my Lupus flares up. My flare ups usually affect my mental health too and unfortunately that can compound things
Secondly try take a break this weekend...try thinking along the lines of it's a long Easter weekend holiday, as long as you are safe, at home, and have food, and a comfortable bed
HONESTLY That's all that's needed right now. You are allowed a holiday from all the numerous issues, in fact the more you can be rested, and not stressed the easier it will be in the long run sorting through the mega amount that needs to be put in place to ensure "you are as well as can be"
It can be hard to sleep if you're in crisis, so many issues taking up thoughts etc, and certain mental health issues often can also impact upon sleep ( eg I get insomnia when I'm hypomanic linked to my Lupus flare ups and Neuropsychiatric SLE symptoms). I can also get insomnia etc if my pain levels are bad (simple OTC pain medication can help there, (if you've none in your pharmacy can probably help). Plus things like soaking in a bath, heat pads, a few gentle stretches can often be beneficial too
Please try rest and take a break. I will do my best to support you. I'm actually trying to take things easy myself as I've been in one a mega mega SLE flare up since end of March. I've had Lupus almost 17 years, I lost my job and career through it, I understand how bad the gov. Social security system can be in helping you actually access finances / the "feeling" you have to prove you are ill etc
It also sounds like you dont currently have adequate medical support , GP etc ... I think that's probably the next thing to address. However firstly take a break, get a rest, think in terms you beautiful butterfly has to first go into a cocoon before the "new lupus you" can emerge
There is hope. ALL IS WELL (even if it does not feel like that right now)
I'll finish for today with some links I find useful for peace and meditation like rest (I personally find these helpful even if I can not actually sleep) ... I need to go to my YouTube library so I will post those as separate comments
I also personally like positive affirmations. I have some written out which will be easiest for me to photo and do a post for you ... Do try them, it sounds "weird" but they do help, They have helped me a lot especially when I was first diagnosed and when I was going through a "grief like process" accepting and adapting to what my life once I had Lupus would be like
All my Love
Sending you good vibes and peace ...YOU ARE SAFE ...Trust in the process of life
Hello Ceri-NorthWales I hope you have a lovely restful and recharging weekend. I'll do a post just for you...My dog Tiny chilling out. I don't think I can add photos in comment here so I'll write a post
Love, light and peace . Things will get sorted out. It's likely to be a very slow steady long long haul so try rest, recouperate, and avoid as much stress as possible. Stress is bad for everyone but especially when you have Lupus
Hello Ceri-NorthWales . I hope things are less stressful and you have had chance to rest and recharge a bit. I've sent a PM to you to try to advise and see if there is a way forward for you now. It would be nice to get a post on Health Unlocked or a comment on your previous posts so that we know where things are at present.and how you are in general . All My love. I'm sure there will be a way to work through things, however difficult things may seem
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Need help and advice please
What can I do? Help please? 
Has your next appt at the L/C Lupus Unit at St Thoms' been cancelled?
Please help me :o( .... is this Fibromyligia ????
