Over the border referral s

[Loopyloo43]

Just wondering how successful has anyone else been able to get to a lupus centre across the border . After 3 years of asking I am done with with I feel like maybe I shouldn’t see anyone as seems such a hassle to the gps and the Rhuematology dept in my local hosp ? Long story short the consultant there I saw twice and he was so rude to me I should have reported him but I didn’t after the second time I asked to see the only other con s there and then she left and went back to Liverpool I was told that the rhuemy needed to give me a second opinion referral but in see him he said it rubbish basically as the hosp and gps are under the same health board so that was dead in the water at that point the gp said the health board would not support me in over the border referral . So the second consult who runs the rhuemy in Liverpool wrote back to my gp asking if the over border had changed because the hosp had discharged me and asked Liverpool to take me on , not heard a thing from the gp in two months so I feel abandoned my last resort I wrote to my local MP who is now dealing with it but just wondering if anyone else had this problem I have been told it’s a money issue tia!

[Ceri-NorthWales]

Hi LoopyLoo, are you in North Wales by any chance?

It's utter useless here. I was diagnosed with SLE in Oct 2019, been subjected to a whole host of failures. Have put in a complaint with PALs (not that they do anything, have 5 complaints with them, no action, heard nothing about any). All this is no surprise a the "healthboard" is BCUHB. They are not healthboard. They are incapable of healthcare and play politics with poeople's lives. They have been in special measures since 2015 and is the most top heavy managed healthboard/trust in the entire UK. There are 60 healthboard "directors" and atleast one is on "2k per DAY. That is where the budget is going. All management and admin focus, zero frontline and patient focus like it should be. There is not a single person in those 5 very long years that has done anything about the state of BCUHB and it seems BCUHB are above absolutely everyone. Local MP is completely useless and doesn't know what communication is or helping his constituents means - despite him professing he's for his constituents. No, he's not. He cares about himself and the top tories. The previous MP is VERY much missed and that is felt across the county. I have proof that the state of BCUHB is not the job of MPs, Welsh AM, Health Minister, Public Health Wales, Welsh Gov AND UK Gov. How is that possible!? Talking to a brick wall is less frustrating.

On March 13th, I had an IPFR form filled in for me to access healthcare over the border in Chester at the Countess. On May 14th, this was approved. Once again, it is BCUHB that are stopping me from accessin healthcare. From daily phonecalls, the last I heard today, was it was being actioned today. Who knows. I am hoping from the Countess, I will have access to Centre of Excellence and lupu specialists in Manchester. I have been messed about enough. I have done so many people's job and not been paid a single penny for it. I am probably owed about £50k in salary in my bank for all the work I have done for GPs, consultants, Glan Clwyd Hospital, BCUHB, North Wales Mental Health Team, PALs and MPs and Welsh AMs.

I feel your pain. And yes, I am completely abandoned, too. SLE is completely untreated and unmonitored. I am FINALLY getting blood tests done on Thursday. First lot since Feb - not that I ever got those results or anyone went through the anything. I am intolerent to the first line of treatment, hydroxychloroquine. BCUHB jsut do not care adn are there to kill, rather than save. It is a political mess. Not that anyone cares or is doing anything about it.

[Happykins in reply to Ceri-NorthWales]

Hi Ceri,

Apologies if I've written this to you before but reading that you're intolerant to hydroxychloroquine - I am too - has anyone suggested Mepacrine as an alternative?

I've been taking it for 5 years with no problems.

Incidentally, I live in Wales but am referred 'over the border' to Hereford, possibly because we don't have any hospitals in this part of Wales.

Jilly xx

[Ceri-NorthWales in reply to Happykins]

Evening HappyKins no you haven't written that before, I'd definiely remember. No one has mentioned the medication you've mentioned. But am still without a rheumatologist, so no idea what is next. Still haven't even come to terms with the diagnosis.

Due to catastrophic failures I have received zero healthcare in regards to SLE and received no help from the NHS in terms of the diagnosis, what it means and help to come to terms with it. That is where Lupus UK and Health Unlocked have come into it.

When I do eventually get to have a rheumatologist again and get a decent one, I will ask about mepacrine. Thank you for mentioning it and I will look into in the mean time. Hoping to hear something this week in regards to rheumatology, but with BCUHB I am not holding anything on that.

[Loopyloo43 in reply to Ceri-NorthWales]

Hi ceri thanks for your reply yes am in Llangollen and it’s the Maelor I was attending am not sure why some gps in Wrexham do send patients over the border but maybe our conditions don’t warrant it in the beliefs it’s soul destroying to be fair I’ll keep you updated on what happens after the MP has been in touch if anything that is !

[Ceri-NorthWales in reply to Loopyloo43]

Good luck with your MP. The new MP here is as useful as talking to a brickwall. He is a complete waste of money.

Wrexham Maelor have a 2 year wait for rheumatology. It's shocking. Last I heard, they had no rheumatologists as one left in Oct 2019, the other left in Feb this year and they have been working with locums including one from Liverpool who I have heard great things about. I am assuming this is the same one you saw. Glan Clwyd have a 12 month wait, no rheumatology department and no aftercare.

It comes down to politics. NHS Wales doesn't get its fair share of rheumatology funding, nor does Wales have any Centres of Excellence. Infusion therapy which has proven to be very effective and has great success within NHS England is not available at all within NHS Wales.

Are you part of North Wales Lupus Group? They funded and campaigned for a long time for a specialist lupus nurse and were successful. The nurse elft her position. SHe is still a rheumatology nurse at Glan Clwyd, but doesn't help any extra and hasn't passed on her knowdlege to her team. I highly recommend North Wales Lupus Group. I attended a meeting with them earlier this year and was hoping to be voted onto the committee at the AGM in May, but unfortunately this had to be cancelled. Please get in touch with Kevin53 , he may be able to help. I would highly recommend you talk with your GP and request an IPFR form to be completed to access healthcare in NHS England.

Please keep in touch. I am near in Flintshire, so not all that far away and am interested in how you get on in trying to access healthcare. It is a mess here within BCUHB. I'll let you know how I get on, too. I should have an update tomorrow 🤞

[Loopyloo43 in reply to Ceri-NorthWales]

Hi ceri I heard from the Mp this morning my go didn’t speak to her and hit the manager to instead so the other manager who deals with these things is off till Monday and she was told that they would put it to the board when they next sit. So it’s a matter of waiting to see. The Mp said she will be back in touch once she knows what’s gone on. I really don’t know why it should be a issue if you needed to ge seen else were fir cardiology or other things you would be sent . I was told it’s all down to money !the Maelor only have one consultant who took over a couple of years ago he came from Agnes Jones orthopaedic hospital he is as rude as can be so there are no others there to see right now. So am stuck and to be fair the reg was nice but I felt out if his depth with me and he had been out under the consultants list of who was running the dept. The one I won’t see so in the end I asked to be referred to Liverpool but surely he should have known about the over the border issue and not discharged me ?

[Ceri-NorthWales in reply to Loopyloo43]

Atleast you heard back from your MP. Sorry to say it, I really am, but nothing will come of the meeting with BCUHB. I know because they discussed me, as instructed by outpatients manager at Glan Clwyd, a couple of weeks ago. They don't care. All they care about is their obscene salaries.

Please ask you GP to complete an IPFR.

I also had an issue with comsultant seemingly unaware of over the border not accepting referral which is completely due to BCUHB being known to not pay thier bills. The consultant from Glan Clwyd discharged me, leaving all the hardwork to GP. WHen what he should've done was refer me to Countess and keep me as a patient until the referral went through. Never should I have been without healthcare and without SLE being monitored, let alone treated. Same with you.

As an update, this afternoon I found out that GP 'sent a letter of referral to Countess'. What a load of crap! The IPFR has been approved, he needed to phone and make sure I have an appointment. There was also no 'urgent' written on it. Nothing. So I have just dicatated a etter to another GP. Apparently, even in 2020, snail mail is the only form of communication and healthcare professionals are allergic to phones. BCUHB are allergic to work and healthcare.

If it was a healthcare profressional in these situation, they certainly wouldn't have to go through all of this hell to get healthcare.

Good luck with all this and please, please do keep in touch. If you contact details of someone decent within BCUHB, outpatient manager at Glan Clwyd, I will pass these along via PM. Not sure how she could help because she works certain areas as apparently they split it internally to east, central and (guessing) west.

We shouldn't have to go through this hell trying to access healthcare. As patients, it should be easy. It should be here's an appointment and they do all the hardwork. But not in North Wales. We have to do the work for BCUHB and not be paid a single penny for it and not a single word of thanks.

[Loopyloo43 in reply to Ceri-NorthWales]

Hi ceri am glad your so upto date with all this it seems there are many out there struggling and maybe the health boards should be taken to task but sometimes the people who are abandoned don’t know were to go or how to even start to fight for what should be a simple app or a phone call to someone one whom can help. I bet if it was a member if there families it would be a total different story ,I think your prob right I don’t expect anything from the health board And low and behold if I became so ill I would go to the papers and high light the issue it seems this is the only way to get things done these days 🤔but maybe am wrong I’ll let you know thanks for your reply x