Diagnosed with SLE, October 11th, 2019, made redundant two weeks later on October 25th. 9 months on and STILL no care and treatment for SLE. I am intolerant to the first line of treament, HCQ. I have been both leukopenic and neutropenic for over 13 months and temperature is near enough always high (despite not feeling hot). At a+e after a serious crash in March, temp was 39C. NO idea why. No idea if this is an SLE thing, due to neutropenia or something else.
Been subjected to a multitude of failures. There is no such thing as healthcare in North Wales.
Had an IPFR completed on March 13th for me to access rheumatology at Countess of Chester in 4-6 weeks. That was approved on May 14th. All this time later and STILL not there and GP refusing to phone them. Have been chasing and chasing and chasing this. Today, I have found out that Countess have REJECTED the referral. They are "not accepting Welsh patients at the moment". What the hell am I supposed to do now!? I have just put in a complaint. (9th complaint regarding healthcare in 12 months, first complaint for England)
About 6 weeks or so ago, I had a further IPFR completed to access care at Manchester Centre of Excellence. I have heard nothing about this.
So many in North Wales access rheumatology care in England because Wales is incapable. How have you all done this?
I am at my wits end. I have to die to get healthcare. I ahve contacted This Morning, ITV, Shaun Lintern from Indpenednent in regards to all this. No one else should have to die to access healthcare, help and support.
ETA - There is less covid19 in Wales hospitals than at the start of lockdown. See attached image. Bright red at the bottom of each bar is for covid19, dark red in the middle is for any other reason, pink is vacant. All info here - gov.wales/nhs-activity-and-...
Healthcare need to stop u sing covid19 as an excuse for medical negligence.
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Ceri-NorthWales
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Hi Ceri, I am so very sorry that you still have not been able to get professional advice regarding your Lupus diagnosis. I suppose the Covid pandemic has affected everything but it does seem that in Wales we are severely limited in the quality and quantity of suitably experienced Rheumatologists. Is there a Rheumatologist at your local hospital? If so it may be wise to see them at least. Sending you big Cwtches and the hope of timely health care for you xxx
Hey Cecily 🤗😊 I am so sick of the excuse of covid19. There is less covid19 in hospitals in Wales now than at the start of lockdown. I wil never go to Wrexham Maelor as they killed my dad, there is also no rheumatologist and a two year ait for rheumatology there. Was seen at the deathtrap that is Glan Clwyd Hospital, but there is no rheumatology department, you are refused appoints, there is no aftercare and every visit there means yet another visit and complaint with the concerns team - who I am now on first name terms with. There is a hospital in Bangor, but that is an hour and a half away. I have no car as it was totalled in a serious crash in mid March and I only have £1100 saved for a car so far - still due £640 tax refund but the pampered public sector are allergic to work.
Countess is 20 mins up the road and is a far better hosptial than ANY within the utter failure that is BCUHB. People in England have no idea how lucky they are. If I had an England postcode, I would not be moaning at all about healthcare.
I have had brilliant care at Countess, Aintree hospital (A+E) and Arrowe Park. Roayal Derby hospital, great for specialist care, but they have no idea what communication is and how to phone someone.
I am already at Countess for specialist physio for permanent right wrist injury. AFter 5 months, I am finally there tomorrow for much needed physio. 5 months on from the crash and my right shoulder still isn't right (but can't get physio on that due to "covid19") and right wrist injury has been exasberated in the crash. Can't do ANY of the exercises as before. Not that anyone in the pampered public sector cares.
Pampered public sector. 100% job security and failure is met with the three P's - Praise, Promotion and Payrise.
I have edited to add how little covid19 is in hospitals as has been the case for a long time. Medical negligence has to end. Many thousands have died needlessly and hugely preventable deaths due to no access to healthcare. This has to end.
I am sorry to hear this. It is so unbelievably frustrating to not have any access to care when your everyday life is greatly impacted by your health.
I can’t offer any help with the process as I’ve not gone through it myself. I did get to the end of my tether a couple of weeks ago (8 years being unwell, suspected SLE after blood tests in Jan and referred to rheumatologist but then COVID happened), my GP agreed to expedite my referral but made no promises, and we then booked a private consultation. It seems so crazy and unfair that I could see a rheumatologist within a week going private whereas the NHS waiting list is backed up into next year. Anyway, the expedite must have worked as I now have an appointment for next week and so was able to cancel the private one I’d booked.
I’m sure you’ve already considered this and it does require funds but it seems quite hard trying to get anywhere with the NHS at the moment, so going private may be your best option if it’s open to you? I had my reservations about this though, and you may do too.
I really hope you get somewhere with this really soon - hoping others can help shed more light on the specific process that you’re trying to work with. This seems to come up time and time again in relation to North Wales. The last thing we need is more stress in our lives as it just heightens all our symptoms and makes everything so much worse.
Atleast you've had yours expedited. North Wales nothing happens. Ever.
I would go private, but I need to buy a car. I have £1100 saved for a car so far. If the crash of March 16th hadn't happened, I could use that money to get much needed healthcare - still wrong to have to go private because North Wales healthcare is non existent but still.
I am lost and cannot wait to the die I finally die. I will celebrate and dance on my own grave. I have had enough. Pampered public sector need to get a grip, do some work and BCUHB NEED to sort themselves out, which they are incapable of, they need to cut the obscene salaries of £288,000 for each of the 60(!) Deathboard directors and they need to invest the money saved into frontline and patient care.
Ceri I totally understand your anger and frustration but I have had treatment in England too and it was honestly not a good experience. In South Wales we have wonderful Doctors and nurses just not Rheumatologists but I hope that will change now with our two new Rheumatologists. If there are no Rheumatologists at your local hospitals then they have to offer you a service out of area surely? I am really sorry that you seem to be hitting a brick wall with getting support. Is your GP able to give you any advice? I really hope that one of your complaints achieves something. Have you tried writing to Vaughan Gething directly?
Vaughn Gething is absolutely lazy sod just like BCUHB. Still waaiting on a reply from him from MONTHS ago. He is another that wouldn't know what work is even if it hit him in the face. Welsh AM mark Isherwood is good, but not seeing results - probably because they are so busy and trying to sort out healthcare for me, trying to deal with the brickwalls that is Glan Clwyd, BCUHB, IPFR teams, dealing with PIP appeal for me after health assessor and DWP are allowed to lie and trying to go against another brickwall, North Wales IAS. Seriously, nothing happens in North Wales. There is NO point to ANY of the public secor workers. Brickwalls, lazy, zero work ethic, zero dare, zero duty of care and they cover for each other - even when a consultant LIES to the concerns team. How the hell are they all allowed to get away with this!? I well and truly hate this ****ing life. I would love to put all of them through all of this hell. They wouldn't let themselves or a loved one go through all this. But duty of care? Means absolutely nothing. None of them deserve any of the obscene salaries they get. They are paid to kill.
They say money doesn't buy happiness. But if I had money, I would have a car, I would bypass the shit that is BCUHB and go private for rheumatology care, have private pyschotherapy (like I did pre redundancy) and I would have a spin bike in the house for sanity considering we're not allowed to exercise, but perfectly acceptable to sit in a pub and get as drunk as you like. I can't even go the gym I went to anyway as it was destroyed all in the name of an unused field hospital which can't be used as they can't put oxygen tanks there. You'd think they'd have thought of that before hand. But no, this is the public sector. They'd be dangerous if they had to use their brains.
Keep trying ,keep pushing, keep going.go round every gp in your practise if you have to.i had a difficult time getting a diagnosis and came across some incompetence in the process.does your practice have patient liaison officer you can try or PALS at the hospital.
Tried this time and time and time and time and time again. NOTHING happens. And apart that they are now stuck. Im in North Wales, the deathabord, BCUHB, cannot help and Countess have rejected my only chance of getting much needed healthcare. I know MANY people in North Wales go to England for rheumatology care. How have they all done this?
I'm sick of this. Those in England have NO IDEA how lucky you all are to get the healthcare you do. In Wales, particularly Nort Wales, you have to die to get healthcare.
I have put in 9 complaints to PALS within BCUHB and a further complaint to Welsh Ombudsman - another two to go to Welsh Ombudsman. They do not care. There is no such thing as healthcare in North Wales. The local MP is complete waste of space and money. It's Rob Roberts and he is being investigated for inapproriate behaviour towawrds young women in the tories. I also have proof of his unprofessionalism. Welsh AM, Amrk Isherwood and his team are great, but not seeing any results.
Just no one seems to be able to give healthcare. I ahve put in a complaint with PALS against Contess rheumatology today. Not expecting anything becase they all look after each other, ignore complainnts and cnsultants even lie to the concerns team - this has happened in recent weeks.
Sorry I really dont know what else to suggest other then sit in A &E and refuse to move.im not sure I'd agree with you that we all get good health care .for years respiratory told me nothing was wrong ,they even didnt agree with a professor of respiratory at the north west lung centre.the last straw was when I went into hospital with right base lung collapse and pneumonia and came out with cancer and epilepsy (which I didnt have) so I told them they were incompetent and refused to see them and now travel to Preston.it took 5 yrs to get a diagnosis and treatment for lupus I've been I'll now for nearly 7yrs .so I just had to keep going lucky my gp is brilliant and very supportive.have you tried the lupus helpline. X
I have already done this. I did this in February at Countess - can't access rheumatology care from a+e. I was also suffering a reaction from HCQ. Thing is, I am diagnosed. just ZERO healthcare and treatment for it and not a soul in the pampered public sector cares. They are incapable, overpaid idiots that need to go back to nursery. All they care about is their obscene salaries. Would any one the pampered public sector let a loved one of theirs go through this hell and torture, refuse them healthcare and abandon them? No. They'd do everything in their power to get that person the best healthcare and in thte quickest time possible.
I take it your gp gave you hydroxchloroquine.its such a shame you are so angry.i hope you one day get an understanding rheumatologist as there are some around.you have to let bad experiences with other hcps go otherwise it will taint future relationships and you will forever be on the back foot unable to work with them. All I can do is wish you well
It was a crappy rheumatologist fromt he deathtrap that is Glan Clwyd - who also refused me an appt in Jan and refusing to answer any of my questions. Healthcare in North Wales is non existent. I ahve had very good experiences in England. It's just that they have decided to reject a desperate plea for haelthcare. They have NO idea. I don't trust healthcare "professionals" anyway. Even less so now. They are there to kill. BCUHB should NOT exist. They are NOT a healthnoard. They ARE a deathboard. If I lived in Chester, I wouldn't have had ANY of these issues. It would've ALLbeen straight forward. I love living in North Wales, It's stunning scenery. We have an NHS - a NATIONAL Health Service, not an LHS, a LOCAL Health Service. We should ALL be getting the same healthcare no matter postcode. But no, they play polictics with people's lives.
How anyone in the pampered public sector sleeps at night, knowing they kill and detroy lives, I have no idea.
I have yet to come across anyone who has had a straight forward journey with lupus.if you think the road ahead is straightforward then I'm sorry to tell you it isnt.im on hydroxchloroquine, prednisone and mycophenolate and it's been a rollercoaster to get there even with consulrants who listen and help.im really sorry but I think you are wrong.they are not there to kill at all.i cant fault any of my consultants I have now and I have 4.yes I've had incompetent ones but I dont punish the ones I have now for their mistakes.
I think you need to talk your anger out with a councillor.
Oh and I sued to go through private pyschotherapy, but can no longer afford due to redundancy. Had the "health assessor" and DWP not lied and actually looked at the 100 page of evidence, I would have PIP. But no, pampered public sector are their to destroy lives. That has now gone to appeal. I will be dead by the time it dose go to appeal.
Counncellor, yes that would be great, but North Wales Mental HEalth Team (NWMHT) have rejected no fewer than 10 referrals from May 2019 to Jan 2020. Those referrals were from many GPs, various consultants from various departments and hospitals, paramedics, police and a+e. They do not care. A big reason why the deathbaord in North Wales, BCUHB, went into special measures in June 2015 is because of how bad MH services are. All these years later, nothing has changed. I have made 3 PALS complaints and taken it to the Head and Senoir manager. Neither of whic care and are on another planet and think they all do a fantastic job - that is not what ANYONE else says. I even had to terminate a meeting in early March 2020 with the Heead and Senoir manager before it even began because the Senoir manager was too lazu to read an email I sent on Feb 21st, clealry stating that the meeting needed to be recorded and minuted.
When diagnosed, I was encouraged to seek counselling to come to terms with the diagnosis. End of Oct 2019, a MH nurse response over the phone to me asking for counselling was "well, what do you want us to do about that?" Not good enough by ANYONE's standard. And they are supposed to be there to help and support with mental health. No, all they have done is confirmed that I am nothing, confirmed I am better off dead, given me a lot of panic attacks, put me crisis and put me in mentl breakdown.
As I keep saying, if I lived in Chester, I wouldn't have ANY of these issues.
Ceri lovely you are so distraught that you are lashing out. There are good and bad in all hospitals and Health boards. Lord knows I have been treated badly by the last few Rheumatologists. I think everyone here wherever they live has had a point where they feel so desperate and unsupported they do not know what to do or where to turn. Not all public sector workers are bad, most are underpaid, overworked and do not have the necessary resources to cope. You obviously have faith in your AM so hopefully he will get an audience with Gethin and ascertain you’re best option. Please don’t think you are not worth it because you are. All of us have very long waits for Consultants because our NHS Nationally has been under resourced and underfunded for the past ten years. My GP told me in March that I needed an urgent Neurology referral. The waiting list was 18 months so I agreed to get my initial consultation privately. I still have yet to see him because of the Covid situation. If I were in your position I would use some of the money you have saved to secure an initial private Rheumatology Consultation. It will only cost you £200-£250 and it will allow you access to treatment and advice. You will get through this and we are all here to support you xx
Our hcps deserve respect not rants and insults.ive tried to offer you some support and understanding but you are to entrenched in your hissy fit to listen.goodnight ,God bless and goodbye
Any chance you could get a loan or do some fundraising to pay for a doctor/transport that could see you immediately and prescribe proper meds?
Also you mentioned in other areas it's better? Any chance of moving to the better area considering you will be dealing with a chronic condition your whole life it's well worth moving.
I like living in North Wales, the scenery is stunning. I love green open spaces and mountains, it's my happy place. A member of the team who works for Welsh AM, in response to me asking how do I access healthcare, her exact response was ".... errrr.... welll..... ermmmmm... if you move to Chester......"
We have an NHS - a NATIONAL Health Service not an LHS a LOCAL Health Service. The care receive shouldn't be based upon your postcode. But it is and there isn't even standards across the board as the basic healthcare we should all have access to.
Can't get a loan due to redundancy. Fundraising wouldn't do anything, because I am not worthy, no one would care. That is the truth.
I understand but you have a chronic health condition and that should be your priority to beautiful scenary. You need to adjust your life now that the healthcare is so important part of your quality of life.
I am so sorry to read your post and it’s just awful what your going through. the stress your under along with no care and treatment is unacceptable. I can totally relate to and totally understand as I too have been very unwell and I too have gone nine months without seeing my rheumatologist for my suspected lupus. I am supposed to be diagnosed on my next visit, have tried the hydroxochloroquine I was very ill and had to stop the treatment as it made me far worse. I find now that we are left and are fighting to be believed. I no longer attend my drs surgery. You will find it very tough if you continue putting yourself under such pressure as drs and the NHS are shocking and they don’t know how to treat us with respect. I nearly had a complete and utter nervous mental health breakdown as i was in your position last year. You will have 2 options one is to stop trying to get the help from these people who clearly don’t have your best interests at heart. It’s very cruel what they are doing your being made more unwell as they are unwilling to walk a mile in your shoes and see how ill you are and they will never understand how poorly we are. They all stick up for one another and they won’t take personal responsibility for their actions so we suffer as a consequence. Your best bet is to try another drs surgery and other drs come away from your rheumatologist and ask to be referred to another one for a second opinion. Mine is useless and I have asked that my next appointment is to be my last so I can then go back to my drs and get a second opinion and a referral with another rheumatologist after speaking to a new dr who suggested it. it’s horrible we have to go through this on a daily basis and wait so long to get a few minutes at our next appointment and to feel we are getting nowhere. My son was very concerned for my mental and physical health when I got nowhere and was going round in cuticles. I am now looking to move to London so I can get an appointment with another practice. Try getting more advice but I don’t think they will do anything about the complaints as I complained on 3 separate occasions and all they did was fob me off and went through the motions of pretending to listen to my complaint. No action was taken and I had used up all my energy and strength to fight them and got nowhere. I then realised I would never win that way and had to try some other way. I am now so ill am now bedridden. Try and get a good friend to attend any appointment and keep all your notes and I hope and pray that you get better care. Take care. J. xx
Thank you for your reply, sending lots of hugs, you've had it very, very tough too.
The last 17 months have been hell on earth. I have been through more than most in a lifetime. I have lost everything. I have been in a mental breakdown since March, following a serious car crash a week before lockdown (photo is in previous post history). I was removed from GP patiient list at the beginning of lockdown whilst still in shock and injured from the crash and after fighting for nearly 12 months for B12 injections. Iam very easily triggered with everything that has gone on and very easily go back into mental breakdown. I know I am better off dead, healthcare so called professionals have proven that. They do not care at all. I am better off dead. I ahve gone through so many failures all at the hands of the public sector. Majory of the frontline in the NHS are brilliant. It's the managers, admin and politics that kills. The "healthboard" (deathboard) in North Wales has been in special measures since June 2015 and it shows - and not a soul in the public sector cares or will get off their backsides to do anythig about it. It is above BCUHB, MPs, Welsh AMs, Welsh Gov, Public Health Wales and UK Gov. BCUHB are as powerful as the most powerful man in thte UK - Dominic Cummins.
New GP surgery are brilliant. Had a B12 injection no questions asked - as soon as I said 'neurological symptoms' "- ah yes, neurological symptoms, definitely B2 injection". They've also given me copies of all blood tests and now have proof that previous GP surgery failed to treat me properly as all B12 blood results say 'LOW - treat if neuropathway symtpoms'. That is all with the Welsh Ombudsman.
Complaints go nowhere, but that doesn't stop me. Even had a consultant from Glan Clwyd LIE to the concerns team a few weeks ago. Again, that is now with the Welsh Ombudsman and I got him on record saying that he did lie and that was in front of managers. But they all look after each other, not a care in the world about patient care. North Wales is terrible or healthcare.
Think GP now literally has his head in his hands as what can he do now. The second IPFR to access Manchester centre of excellence, i hav heard today that te IPFR team, cannot find te IPFR. Welsh AM is going back to Countess to plead my case and the IPFR stays open for 12 months, which is good. Just have no idea how the hell I am supposed to get healthcare. If March 16th hadn't have happened, I would use the money I have saved for a private appt.
Hi sorry for late reply am very unwell both physically and mentally. I think as you know it all just catches up with you. Would you consider a house move it’s shocking we have to do it just to actually get medical care. I think sometimes the more we want something to go our way and it doesn’t it will make us more unwell. A good friend of mine said enough is enough it’s you or them so I have almost got rid of every one involved in my medical care and am now almost on round 2 now. I am in the process of moving home I am all packed up just have to find somewhere affordable to rent. I read a lot of your and others posts and you deserve help and no wonder your so down about it all. I almost had a break down last year. What about contacting other charities to work on your behind let them do the work whilst you rest. I now have a case worker from age Uk who is helping me write some letters maybe you just need someone to act on your behalf or maybe you have to leave where you live. It’s shocking what we have to do to get treatment. I wish you all the very best to am just about to crawl back to bed for another 18 hours of sleep. Fingers crossed you get somewhere and if I find something that happens to help I will let you know. take case and god bless. xx
Living with Lupus is always a challenge for us and for the doctors at times, because they run out of ideas to help us.
So for that reason, many of us have to switch Rheumatologist or GP’s to find someone who can take a fresh look at our symptoms.
The GP “could try a very low dose” of Prednisone for 24 days to bring your FLARE(S) back under control.
I know a few Lupus patients that only use a GP for Lupus - Best to have a Rheumatologist, but I would start with seeing the GP again.
Prednisone dosage for 24 days option:
( 20 mg for 3 days, 17.5 mg for 3 days, 15 mg for 3 days, 12.5 mg for 3 days, 10 mg for 3 days, 7.5 mg for 3 days, 5 mg for 3 days, 2.5 for 3 days)
After reading your posts and with your diagnosis, you are like many lupus patients and we have to become proactive in our lives “living with Lupus”.
1- List your specific Lupus Symptoms based on the information provided below.
2- Try to set another meeting with your GP to get their help with your Specific Symptoms - go in with list
3- Start trying to help yourself as we do living with Lupus by seeing what *Lifestyle changes, * diet changes, * staying out of the SUN, Add Vit D, etc -
because many of these can help with Lupus FLARES when you can’t be on Hydroxychloroquine as the 1st line of defense.
Being PROACTIVE helps with our mental status so that LUPUS does not have us, but we are trying to make a difference in how our bodies are affected by Lupus.
Since there is NO CURE, we are always sharing what helps in our lives.
WE have to Take Care of Ourselves, so Lupus doesn’t take CONTROL of us. 💜
I hope some of this helps you since at this point you are in the “beginning stages of learning to live with Lupus”. Listen / Read to the things that have helped others, and see if you can apply them to your life.
We live with it one day at a time, always an interesting “journey” 💜🥴💜😊💜
Keep reaching out with specific problems and see what this support site contributors can offer from their experiences.
Lastly, you could CALL THE LUPUS UK organization to see how they could help you.
Thank you so, so, so much for all of this. I'm looking through all the links and videos. Thank you for taking so much time out to help, I cannot thank you enough, thank you 💜
After going in presidone last March to help in the recovery of pneumonia and pleurisy, I am not keen at all to go back on it. Despite being barely conscious, I couldn't sleep whilst taking it. I was on 6 tablets a day (in one go), it also gave me a rounded face, despite losing 7kg in less than a month (I'm usually around 65kg and went down to 58kg). Apparently I was restless and talking nonsense too, both when awake and asleep - I have no idea, I little to no memory from beginning of March 2019 to easter week 2019.
I'm going through you list and videos and will do exactly that, thank you so, so much. You are an absolute star. Thank you! sending huge hugs of gratitude. I cannot thank you enough, honestly 💜🤗
You are right - huge doses of prednisone is so hard on anybody. We have had members on steady high doses and back in 90’s it was more of a standard treatment- NOT now.
If you get to that point again, recommend the step down approach and only 20 mg at the top working down slowly every 3 days.
Much easier to handle and your body slowly starts taking over the production of natural steroids this way.
We always take all doses before “noon” each day, otherwise we ‘can’t sleep’ .... many patients agree that is the only way they can tolerate the drug.
Great Videos from Previous Years Lupus Summits & Conferences on many topics & Guest Speakers as ‘Sara Gorman’ who wrote “Despite Lupus - How to Live Well with a Chronic Illness”
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
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