Feeling let down, frustrated, angry, scared....Anyone else battled to get a referral outside their area health board?

I'm going to try to keep this concise and not go over too much of my history with SCLE. I think those that come here regularly will know that I have struggled to find a consultant that understands lupus (SCLE for me) and to help me. I finally found a Dermatologist this year, (My Knight) who has helped me no end and prescribed me 3g Mycophenolate a day, in an attempt to get my residual symptoms under control. Symptoms that were mainly systemic and should have been treated by my Rheumy. But after 3 years under her care, I have no faith in her whatsoever, unfortunately. My Knight actually told me, he was pushing his role as a Dermy, but could see I needed help. He saw me at my lowest, when I had handed my notice in at work as I couldn't cope anymore. Apart from my Rheumy not helping me out, she has no people skills and never makes eye contact with you.

Anyway, I digress. My Knight has left employment with my health board, Hywel Dda, (Wales). I discussed following him to Cardiff at my last appt with him and he told me he had been refused himself, with some of his patients and I would have to find another way of getting referred to him. In the meantime, he put me on the Dermatology list for a GP with a specialist interest - at the other local hospital. I told my Knight that I didn't want to stay at the hospital I had been seeing him at, as I had terrible experiences with the other Dermy doctors there - being told that I just needed to moisturise my hands and being left to leave an appt in wracking sobs, tears streaming down my cheeks after one refused to help me. even though I was begging and saying I couldn't cope.

So yesterday I had an appt with my GP and asked him to back me getting a referral to my Knight in Cardiff. I explained the background. He said he understood. But it was categorically no. They don't work. It goes before a panel. They turn down every single one. Wouldn't help. Wouldn't budge.

So upset, frustrated, angry, alone, upset.

I know that sounds dramatic. And I can ask the GP with the specialist interest to back me for a panel review, so my GP tells me. He says that I should get the GP with specialist interest to say that monitoring me is beyond his expertise and that I should be referred to my Knight in Cardiff.

But it's the effort to get this all sorted. It's draining isn't it. Why cannot I see my Knight? Why doesn't Wales have any lupus specialists that I can see. Why is there is internal political battle with health boards where mine wont pay for you to be referred to see someone outside your own area?

Surely, that is detrimental to my care? I am very lucky, I know, that i haven't experienced internal organ involvement to date, but I have SCLE with some systemic symptoms and I understand that nearly 20% of people with SCLE end up with SLE. If not managed correctly, we all know lupus can be fatal. That's my concern, with not trusting the doctors I see.

I had asked my GP - before my Knight sorted out my meds - if he wold refer me for a second opinion from a lupus specialist, at either the Royal National Hospital of Rheumatoid Disease in Bath or at the lupus centre in London and he refused that too.

On top of it all, I'm not convinced the MMF is working yet - started 20th July and I am waiting for appt with Neurosurgeon re syrinx cyst on my spine. Had a further MRI on my head/neck 2 weeks ago, but MRI hasn't been reported on yet. Bene told 30 weeks minimum, so April 2017 before I can discuss this with someone who knows what they are really talking about.

Sorry to go on. Anyone else experienced these problems finding a doctor they can trust? Or had a case go before a panel?

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  • Oh Wendy love.

    Wrote the DVD script, made the tee shirt etc.

    I know, I know, my heart goes out to you.

    I wish I could say a few words which would unlock your path to a happy conclusion. Id do it for myself first πŸ˜€, then you.

    It is truly unbelievable that in the 21st century that there is an enormous, yes, enormous body of people in the UK who it seems no one wants to help. But you have to get your head around that. Process it and consider your options.

    I came on here in a similar state in March I think. No one listened. I was laughed at, condescended to, ignored. Someone on here, forgive my poor memory guru who helped, who simple asked if I was worthy of care?

    This worked into my brain, through the fog and it eventually lit the blue touch paper of my indignation.

    From there, with help from here, I formulatd a plan via head GP of surgery. I condensed my aims and complaints and read him a short speech basically demanding referral to a Lupus specialist. I got the referral though he did it the hard way. Gotta have the last laugh. Or so he thought.

    It is possible to get what you want. It is. You just have to gather every ounce of grit, energy, will and fire you possess and not take no for an answer.

    To directly answer one of your points, dont dismiss your GPs suggestion of engaging with the GP "with an interest". Sounds like he knows how to work the system. Ive run into these boards myself (ouchπŸ˜‚) poor joke. They stand sentinel over every surgery and district. Their job is to save money. Their first answer is always no. They say it to everyone Wendy, they havent looked you up and down and looked like you smell I promise.

    Remember the old saying, its only the squeaky wheel that gets oil. Refuse to go away.

    Do as your GP said re other GP go see him if possible, tell him your tale and what your lovely GP said. It sounds as if he may know him otherwise I dont think he would have suggested it in those terms. Could be wrong.

    I know its anothet round in the fight and you are on your knees. But please quietly think about it and find that inner fire we all have, those embers that survive no matter how many buckets of water that are thrown on us.

    You are worthy of care. You are worthy of care. Of course you are.

    If I can help in any way, just ask, or private message me if you want.

    Thanks for your post. Despite my small successes I have hit another NHS wall, but talking to you, Ive talked to myself and may have just found my spark too.

    YOU ARE NOT ALONE. I WISH WE TWO WERE, but there are so many of us battling for our right to care. It is a national disgrace really. Children needing donors get the headlines, but there are not enough newspapers in the world to cover our needs.

    Take care Wendy. Treat yourself to some snuggly time and whatever floats your boat. Nurse your spirit better, then come out fighting. You sadly are your only advocate.

    And please remember to take someone, preferably male, to every consultation with these lazy, uncaring, quacks who get paid as doctors. Witnesses make for better quality communications. Promise you.

    You will be worn out reading all this.

    Snuggle down. Feel bette Wendy



    PS Have you seen S Wales support group below? May be help there? Just a thought 🌹🌹

  • Big thank you Footy for taking the time to reply, in such a wonderfully supportive way. Sometimes it's just all so overwhelming. It didn't help that yesterday I woke up at 4am with a terrible headache, with myalgia behind my eye and ear again. Spent another day in bed. I'd had nearly 3 days in bed Friday, Saturday & Sunday due to a terrible cold. Haven't had one of those headaches for a few months now and certainly not since starting MMF. The headaches were one of the residual symptoms I was hoping the MMF would clear up. So maybe disappointed all round. I have no energy and can safely say I've lost my mojo.

    Anyway, I spoke to my fantastic husband last night about it all and he agreed, let's see what this "GP With a Specialist Interest" says about supoorting my request for referral and we'll take it from there. If he refuses, then I am going to approach my GP's surgery practice manager and not complain as such but tell them I don't agree with my GP's stance, that he wont even try for me.

    I think like Barnclown has said, I have SCLE, allergies, slight hypermobility, osteoarthritis in hips, knees and back, a syrinx cyst on my spinal cord (that is still being investigated) and possible slight vasculitis. So maybe I should be playing on the fact that I have a few chronic, complex health issues as well.

    So, again, thank you for your time, support and compassion. My head is clear today and let's hope my mojo is back soon.

    Wendy xx

  • You are most welcome. Been there. So has everyone here.

    Youll do the same for someone one day. We pass it round.

    Bravo lovely hubby too.

    Keep that resolve

    Best wishes


  • Footy, meant to say that I know exactly what you mean about taking someone to appts. When I was at rock bottom earlier this year and had handed my notice in at work. I took my husband to my Dermy appt with my knight. I know my Knight was already on my side and knew I needed help, but taking my husband with me, reinforced how seriously this situation was effecting our whole family. Unfortunately, my husband has a very demanding and responsible job. Taking time off is far from easy. Plus having 3 children who have special assemblies, xmas concerts, parents evenings and rugby matches etc, it is a real juggling act to get time off for the kids when necessary. I know that he would love to be there for all my appts but it is impossible for him. Maybe, see how this all goes and if I think he's needed at practice manager appt in due course, then I will take him then. Good tip. x

  • I understand Wendy, its a far from perfect world when we have to think in these terms of witnesses to start with. Perhaps you have a friend who could deputise? But you are juggling so much without ill health entering the scene. Its no wonder it got too much.

    That is exactly what this forum is for. I for one have been on to lament and rant more than once! Support and love is always freely given here. Staying with us and participating, you will share your growing experience with others in time.

    For now, take care of Wendy. Good luck with your onward battles.


  • πŸ‘‹πŸ‘‹πŸ‘‹πŸ‘‹ hello wendy....what can I say...footy has said it all! I too am dismayed by the situation you're in😟😠

    Maybe a bit of my own experience will be useful though:

    I live in England. Since my visual symptoms became so sinister 5+ years ago when my underlying immune deficiency + connective tissue disorders FINALLY began to be recognised, I've been referred to various depts of a huge university hospital in a neighbouring NHS trust several times...always because of the complexity of my case and rarity of my multisystem conditions. When I'm being referred by my rheumatology dept (which is at this university hospital) these referrals go through no question. Recently a gyn-urology consultant in our trust referred me on the urgent pathway to a gyn oncologist at the same neighbouring trust's university hospital no prob. When my GP refers me to that university hospital she usually does have to argue my case to her board, but they always give in.

    I think this relatively recent proactive NHS efficiency may be partly because for 20+ Depressing frustrating years my current NHS GP practice & all the consultants I've been seeing at various hospital clinics + A&Es had been missing the infant onset lupus & primary immunodeficiency & vascular rulers danlos underlying my multiple multisystem conditions. They even spent years misdiagnosing a malignant tumour as arthritis....until a bright spark ortho surgeon from Kings in London gasped & did an urgent amputation

    And before that there were nearly 20 relatively miserable years with other uk NHS GP practices & hospitals missing my underlying stuff...

    over the total 40 years, the NHS saved my life several times...and also my husband's...so...

    and here I am now at 64: thriving thanks to to Lupus UK + the support here on our wonderful forum...+ finally I have a collection of great NHS clinics treating me, monitoring me and fussing over me carefully...and I'm feeling better in lots of ways than I have since my 20s...Go figure...

    Courage...please keep us posted....and keep up the pressure....we're all right by your side β€οΈπŸ‘«πŸ‘­πŸ‘­πŸ‘­πŸ‘­πŸ‘«πŸ‘«πŸ‘­πŸ‘­πŸ‘­β€οΈπŸ€πŸ€πŸ€πŸ€πŸ€

  • Thank you! For your helpful and supportive reply. Between you and Footgirl, you brought tears to my eyes. I'm so glad I found this site and all of you lovely people. I have a wonderful husband and 3 fantastic children but with these health issues, it is very easy to feel alone and misunderstood. I had a bad day yesterday and it all got on top of me. The headache returning, I found difficult to accept. But I have recently realised that these headaches could be related to the syrinx and may not just be lupus related. Despite GP and rheumy telling me that this was a coincidental finding and I am symptoms free, I have increasing back issues, at all levels of my back and these headaches. I guess until we find out what has caused the syrinx, I wont know. Not to go into too much detail, but the diarrhoea is back too and slightly green. I am wondering if this needs further investigation after all. Both the diarrhoea and the headaches disappear when I am on steroids. And of course I have more energy then too. I miss the steroids, a lot.

    But a big thank you again, for sharing your journey with me, it does always help and shed light on things.

    Have a lovely day Coco.

    Wendy xx

  • Take care dear πŸ€πŸ˜˜πŸ€πŸ˜˜πŸ€πŸ˜˜

  • Hi Wendy

    I can't add anything to the great replies you've had from Footy and Barnvlown but just want to say I'm sorry your having to go thru these stressful struggles. It's enough being ill without this extra. Do hope it works out well in the end. Keep fighting and you'll get there. X

  • Thank you Misty14, for your reply and support. It means a lot when people take the time to reply to your posts and I am very grateful. Wouldn't it be fab if there was an advocate who could do this on our behalves? Someone who could fight our battles for treatment for us. Oh well, today is a new day. I hope yours is a good one. Wendy x

  • Hi Wendy

    Whenever I've had to go out of my area for referrals it's always been granted if the rules are adhered to. Hopefully if you do what that GP suggests you should be successful, but money is tighter. Your usual GP doesn't sound very supportive at all as you could also do with a new Rheumy but he won't agree. Is there another GP in the practice you could see?. I also think it is not on that you've got to wait till next year for MRI results!. Unbelievable!. I hope you feel a bit stronger today and can formulate a plan. I find that helps me cope. I'm in a lot of pain at the moment , waiting till 31st Oct for injections. Good luck X

  • Thank you for your advice. Noted. Sorry to hear you are in pain. Where do you have your injections?

  • Hi Wendy

    I have them in my right leg for nerve pain. The ones I'm waiting to have are different and could give me longer relief which is badly needed, thanks for asking. Keep us posted how you get on, fingers crossed your successful. Take Care. X

  • Sorry for your lousy pain Misty. Feel better soon. Do hosp or surgery do injections? Hope they deliver the level of relief you need



  • Hi footygirl again

    Thank you for your good wishes. The hospital do the injections as these involve an electricity current called Radiofrequency!. Hope to give me longer pain relief as nerves don't like it. Bit scary but need the help. Hope your doing well at the moment. Keep scoring. X

  • Hi Wendy been offline for a bit, so sorry to hear of your distress.

    I have to say that I was outright refused to get a referral to a specialist by rheumatology (said I would have to be dying) & gp with interest (if it is the same one) hiding in dermotology, he just fills the room with folks, could be students & I feel I am the circus act and he just has nothing much to say....so went back to gp said want referral back to rhemie, wrote the reasons why in a letter, she forgot ! Had to remind her & ? I have no idea where I stand, god love them.... Sooooo I have decided who needs a holiday, made an appt with prof d'cruz in London in December when I have annual leave.....:-D at least I can get some answers and advise this year... Sister (mine) has a masters in health care management/business said to complain to the health board about the lack of specialist care here. Heard on national news we have no demotologist in this area.... So like you trying to pick my energy level battles.... My daughter was poorly recently so tacked her needs first, sorted so back to what to do next... It is frustrating and sometimes ya just need a nap..keep in touch...not sure if our local mp can help, he's keeping a low profile having pulled out of leadership race against May.....big hug ml

  • Hello maggielee. I got your Pm and will respond later on. Probably is the same "GP with special interest" can't be 2 in the same hospital. Heaven help us. I think I see him 17 November, I will have to check. So what are my chances of him agreeing to back referring me to Cardiff to my Knight. I am preparing a battle plan. Will be lovely to have that coffee and chat face to face very soon. x

  • Thank you all once again for your very kind replies. It has been a bad 11 days or so. Cough/cold, followed by headache with myalgia, then an unpleasant infection on the side of my nose and finally a bladder infection. Luckily I managed to get a doctors appt on Friday, as I was worried about this getting worse over the weekend and not knowing how to deal with it. This is the first time I have been ill, with anything other than lupus/OA symptoms etc since starting MMF. The GP was very understanding and could see that I was under the weather. She gave me 3 days of Nitrofurantoin to take, hoping that this would knock the bladder infection on the head. Fingers crossed I'm on the right track now. x

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