I’m struggling

Hey @winfield ... I hope your well, I havnt seen you on here recently?

I’m hoping that I am going to have an appointment very soon, my referral was sent to him on the 10th January! However, due to the fact I’m Welsh and Dr Pauling is in England, there was a massive problem with the funding from the welsh assembly! Long story short - Kirsty Williams who is my local MP got on my side and sorted that just recently so fingers crossed I’ll be seeing him in the next few weeks, I hope! Considering it was an urgent referral...! Stay warm 💙

Thank you @Kc_1411

I have been hugging mugs of hot chocolate for days now 😂💙🤗 my son and I have woken to knee deep snow! 🙄 stay warm xx

Thank you @fairy56

I edited my post from scared to impatient. I guess confusion could fit in there nicely too 😂🙈 as I said above in response to @winfield1 , major issues with funding etc. However, this (I hope) has now been resolved so I’m hoping to receive appointment soon...! In fact, ima call Bath today to double check!

My rheumatologist referred me to Bath on the 10th Jan, and signed me off from under his care! For the last 7 weeks I haven’t been under watch by anyone! I’ve been given no advice, no support lines, no nurse advice contact, absolutely nothing! My GP is fantastic but he doesn’t have a clue about scleroderma and neither does my ex rheumy...! In fact, no one believes I have scleroderma, even though my rheumy has referred me to a scleroderma specialist 🤔

I was recently diagnosed with “severe, non-scarring Alopecia” all of my hair has fallen out 😢 I wonder why. Xx

Agnbg0826, I’m sorry too 😒

My rheumatologist put me on 40mg prednisone daily, reducing by 5mg weekly. He also put me on hydroxy ..... he put me on this medication because my symptoms were progressing, however we still did not have a diagnosis so he suggested we “try this for now” . 6 weeks later at my next appointment he agreed that I had not responded to the treatment whatsoever and they had absolutely no effect.

So, he told me to stop all medication and was not happy to prescribe me immune suppressents until I had been seen by my specialist xx

@amd21 thank you ever so much, I have saved the link so I can print it off when next visiting the library and hand it to my GP at our next appointment, thank you xx

@winfield1 - you are amazing !!! I am truly touched that you would do this research for me, I’m a lucky person 💙 thank you!!!xx

I’m watching the clock tick, as soon as it hits 9am I’m calling them 🙈 thank you so much, you are an incredible person xxxx

@winfield1 - read my last comment on this thread , an update from today !xxx

Thank you @lucyjean

I have been ringing Dr Paulings security on a weekly basis, since my rheumatologist referred me to him on the 9th of January, for an update and waiting time for my appointment with him. The problem is not the waiting time, Dr Pauling has approved my referral etc. However - because I am Welsh and I live in Wales, the Welsh Assembly are refusing the funding for me to be put under Dr Paulings care and be seen / receive treatment etc because he is based in Bath, which is England. Their reason being they do not want to give our “Welsh” money to an English hospital / specialist. They want to put our money into Welsh hospitals! This is my problem, and the delay in my diagnosis and treatment for this ever so rapid, progressive disease!!

My GP and my Rheumatologist are fighting my corner regarding the funding, and addressing the Welsh Assembly that there is no other option but for me to be treated in England as no where in Wales has a scleroderma specialist, and how essential it is for me to have the funding to be put under the care of Dr Pauling.

I rang Bath hospital today for another update and they have still not received the “go ahead” from the Welsh Assembly! I am unable to attend an appointment with Dr Pauling until they receive the money, in the meantime I just have to suffer in silence and pray the Welsh Assembly fund my treatment

I have been in touch with my local MP regarding the matter, she is helping me but still no positive outcome as of yet I actually E-mailed Dr John Pauling myself this afternoon out of desperation!! Explained my worsening symptoms and even sent him photographs of my skin thickening / Raynauds ect. He sent me a very quick response apologising about the situation and how it’s becoming extremely difficult to obtain approval to treat Welsh patients, he explained he is unable to give me advise on my symptoms until / IF / when I get to meet him in person. He did send me some great links though, I thought that was very decent of him and I was extremely grateful for his acknowledgment.

I have exhausted every single option possible to get me to Bath but I’m fed up of disappointment now

The worse thing is this - I am denied the funding I NEED for my condition, so I asked if I could pay to go private with Dr Pauling and that is not an option either as it’s through the NHS.

I’m running out of hope, I’m on no medication because I didn’t respond to the medication my rheumy tried me on, he signed me off from his care once he done the referral, my GP has no idea about SS so I am very alone in the respect of professional support and advice.

Thank you xxx

This is shocking, I feel so angry and let down for you.

You know that funding hasn't been agreed up to yet from the Welsh Assembly - can you speak to your practice manager at your Drs surgery and ask who exactly you need to speak to about getting this sorted?

It's not good enough - what are the time limits ( e.g. Is there a panel that only meet so many weeks - if so when's the next meeting)?

- don't give up - you deserve better xxxx

Hope you don't mind, I've asked in a private scleroderma Facebook group if there are other sufferers from Wales and how they went on getting referred to a specialist in England re funding. Obviously no names given. I can remove the post if you want me to xx

Also the SRUK may be able to help if you call them -

sruk.co.uk/find-support/hel...

My Husband is going through the same as regards to Funding he has worked all his life paid his taxes and National Insurance and yet he was denied PIPs. he is currently fighting the claim with the help of his GP and Doctors from Royal Free Hospital Hampstead, A big thank to Royal Free Hospital Hampstead they have been so helpful, supportive towards my Husband's Treatment. We take one day at a time he is currently battling with severe ulcers in his and legs.

Hi @tanya1981

That is another option for me, and not something I have taken into consideration yet. It may be an option but this whole process from day one has been a massive headache, it’s been really difficult. I’ve been passed from pillar to post, they’ve had me in for suspected cancer, a life-threatening infection on the heart called endocarditis, they’ve medicated me for an illness that I didn’t even have, they drew blood to send to Bath laboratory to test for systemic sclerosis, it was only 3 months later that I found out those bloods were sent to the wrong lab, they done bloods to diagnosis Raynauds but done them wrong on two occasions, they threw me out of A&E at 3am with no phone, no money, no transport and an hour and 15mins away from home, it was -6 degrees, I had a massive Raynauds attack and sat in a bus stop until 4am crying my eyes out... so much has gone on and during this time my symptoms have worsened, and noted in every letter sent from my rheumy to my GP .... they have delayed my diagnosis and treatment for months due to a complete lack of competence on their behalf ! I’ve finally got my referral to Dr Pauling, I’ve come so far in all of this. Now I have this “funding” issue thrown in my face, just when I start feeling hopeful again! I can not possibly face going private and going through the whole process again. I have asked if I can pay to go private in Bath with Dr Pauling instead of fighting for funding, but I’m even denied this because he is NHS ...! For two months I’ve been sat at my front door like a dog waiting for the post man! Waiting for my appointment letter with Dr Pauling. I’m fed up of disappointment now and I try not to get my hopes up anymore - what will be will be I guess 😒xx