So this morning I received this letter from the Healthboard. I'm confused for a couple of reasons.
1. It's two months later, why now?
2. Does this mean I should've been shielding'?
3. Is this acknowledgement (finally!) that I am 'at risk' to COVID-19? due to SLE - particularly as was only diagnosed in October 2019, is active and is completely untreated and unmonitored, chronic leukopenia and neutropenia, Raynaud's phenomon, migraines and PPPD. All of which are untreated and unmonitored.
4. It says I am under rheumatology services at this healthboard, when I am not. I am without rheumatology and the consultant discharged me on Feb 7th, without first referring me to rheumatology at the Countess of Chester, leaving all the hardwork to GP to try and find out how to get me in Countess and leaving me without rheumatology care for a long time, until I eventually get to see a rheumatologist at the Countess - if I ever do.
I have left a voicemail on the adviceline for clarification on this letter, so will see what they come back with.
Has anyone else only just received a letter?
Written by
Ceri-NorthWales
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Most likely because the wheels of bureaucracy turn slowly, and often inaccurately. And the NHS is a large bureaucracy, among other things. This is a form letter, and probably sent to legions of people who pop up in some NHS database somewhere, either accurately sent or not.
I received the same letter yesterday, from the same health board. Its not a shielding letter, its simply information concerning any upcoming appointments you may have. You'll get one whether you have an upcoming appt or not...its a standard issue to all rheumy dept patients.
Not everyone with lupus is receiving a shielding letter, theres a points system that is concerned with the type and/ or strength of medication you happen to be on...if you don't score enough points, you dont get a shielding letter.
I have had lupus for about 20 years, but because I've managed to reduce my medication over the years I'm not classed as vulnerable enough.
But you use your common sense, and do what you think is right by you.
The situation in North Wales is still pretty bad, so letter or not, we have to take responsibility for ourselves and not wait for instructions that might not come.
If you got the letter, then somewhere along the line, you've been registered with the BCUHB.
Here's the thing: the letter is not what is most important, protecting yourself is. The letters are an attempt to help at-risk people know how to protect themselves. They are not a 'proof' that you have a particular illness. You already know that you have issues that make you vulnerable, so you need to shield and protect yourself in all ways possible.
The NHS is sending a variety of letters to people based on particular doctor's patient lists and available records, based on how and when you have appointments in the past. It is not certifying anything particular about your particular illness, just an attempt to help patients who are at risk know what they need to know to protect themselves.
If you feel you need a letter or treatment, that issue should be worked via your GP. The GPs are the controlling factor that will refer you to a rheumatologist, not a letter from the NHS.
Thing is though, I don't have a GP due to being removed from the GP patient list by the GP practice manager (not the GP) whilst in crisis, going through a mental breakdown a few hours after I had the police at my door at half 1 in the morning in concern for my welfare and with advise to seek help from GP in the morning (GP practice managers response was to remove me from the patient list), whilst still in shock and injured from a serious car crash, stranded in the village I live, due to no car and no public transport, has ,inor surgery on the injured shoulder 2 days after the crash, had a resechuled scary neurology appt two day after that where migraines and PPPD was diagnosed, denied PIP, awarded 0 points - that was all in 5 days! And this was the week of March 16th, the lead upto to lockdown on March 23rd and a time when there was mass hysteria, fear and panic. And severe B12 deficiency - which I had to fight like hell to get correct treatment for just to be told 'no' due to the wonderful Public Health Wales.
Was diagnosed with SLE in Oct 2019 (made redundant two weeks later), have chronic leukopenia and neutropenia. SLE is active and completely untreated. I am not on meds not because I don't need them, but because I have zero access to rheumatology - due go devolved NHS and BCUHB being is a very excuse of a 'healthboard'.
Did (or still have?) Have an IPFR form going through GP for me to access rheumatology at Countess of Chester. Who knows what is going in now. Last I heard, at some point in April, was the Countess had gone back to GP with the question 'how much is this likely to cost?' How long is a piece of string? I know why they have asked though. It's because BCUHB are known to not pay their bills.
So I am complete broken, and completely abandoned. I am on mirtazapine, which works wonders, but as I have no way of getting any more, I am saving it. I am in desperate need of help and completely alone. People the other side of the border have no idea how lucky they are.
If I lived in Chester, I would easily have access to rheumatology, decent mental health support and freedom of choice of hospitals and full treatment options available for SLE.
I am so lost, its unreal. I would NEVER let anyone go through any of what I have. I have so much passion to help, but because of my postcode have zero healthcare. And at a time where I desperately need help, support and healthcare.
MPs, Welsh AM, and Health Minister all utterly useless. Not even a single phonecall. I miss the MP we used to have. He had a work ethic and always, always helped his constituents.
There has been so much loss and devastation over the last 14 months. Life has turned upside down. Previously very fit and well, leading a VERY active lifestyle. No help and support from the NHS. Atleast 10 referrals to North Wales Mental Health Team since May 2019 from GPs, consultants, paramedics, a+e and police, all rejected. So much for people working in healthcare having a duty of care.
I can't even remember the last time I had a hug and I would love a hug and cuddles from niece and nephew. From whatever reason to them I matter - and my sisters' dogs. Would love to have fusses and cuddles with them, too. Humans can learn so much from dogs - trust, loyalty, compassion.
I know I am nothing and I know I am better of dead. If I was worthy of help and healthcare, I wouldn't be completely abandoned. I hate enduring this never ending, excruitatingly painful so-called 'life'.
Ceri, remember that card. You are not nothing. People care about you. It's just going to take a little longer to fight for the care that you need because of the virus. But we are all here for you, stay grounded xx
As always thank yo for your reply Thing is, the failures I have been subjected to are nothing to do with COIVD-19 and everything to do with politics and devolved NHS. Even after this pandemic, the issues won't be resolved. If I lived in Chester I would have none o these issues. I like living in Wales and am close to the Clwydian Range, a beautiful set of hills, stunning natural beauty. What is annoying is no one, absoultely no one, takes responsibility and no one cares about the state of North Wales to do anything about it. I miss the MP we used to have. He cared and ALWAYS replied to his constituents. This one doesn't give one and has the absolute audacity to say he cares about mental health, yet doesn't give two hoots about the state of North Wales Wales Mental Health Team. One of the members of his team is supposedly worried about my mental health, well then do some work, sort BCUHB out, get on my side for change within North Wales Mental Health Team and atleast show a liittle horror in the fact that NWMHT have had atleast 10 referrals since May 2019 from GPs, consultants, paramedics, a+e and police. All of which have been rejected as I 'don't fit the criteria' aka I'm breathing. What happened to people having a work ethic?!
If consultants, GP practice manager, BCUHB, MP and team don't care, why the hell do I still have to endure so much pain and suffering. My legacy has to be change. No one, absolutely no one should go through what I have. Seriously, what has to happen to get some healthcare, a rheumatologist, help and support. I am at the point where I would actually welcome being hospitalised for mental health as long as it meant getting the help that I so desperately need. But I know it wouldn't be in Chester, where I have heard great things about (it's rare to have decent NHS MH support), but no, it wouldn't be. It would be in North Wales where they don't ave a clue. So much loss and devastation over the last 14 montths. I am a shadow of who I used to be.
2018 was a game changer of a year, just for 2019 to come along and confirm everything, and more, that I already knew was true. I went through private pyschotherapy - actual, real help with mental health. Working through childhood traumas and grief. You can't force moments to happen, it just happens and in one session, things didn't feel right and the therapist knew. I felt like I was being chocked - kind of. it was odd. If took me an hour and a half, but I said two very short sentences that I had held on to for then 9 and a half years. Words that I needed to say to my dad at the time of the fateful accident. It was difficult, but it was done in a very controlled way, I nearly went into a panic attack. It felt like such an achievement after I said those words. I said it in the moment, to my dad and how they were supposed to be said. I know it sounds odd, ubt I'm a very visual person and it transcended that I was being 'chocked' b these words. In therapy, you can't hug, you have to ask, she knew I wanted to hug it out, so I asked for a hug. It was a huge moment and as a result of working through so much as a byproduct, for the first time in living memory (sinc being a very young child), I started taing care and looking after myself. I even plucked up the courage to go to the dentist after 10 years of not going (yes, I know shameful! And didn't need any work doing either :D). That is how you work through mental health. By getting to the root and working through it, in a controlled way and with someone you trust.
Being 17 was tough. Two huge life changing events. Lost my dad suddenly and two and a half weeks after my dads inquest, I lost the roof over my head. When I say I know what it is like to go through hell, I am telling the truth. I thought my issues were from being 17. It's not, it was 10 years prior. This I worked out in private therapy. I wish I was never made redundant, because then I would still be able to afford that help. Oh and at 17, I was in sixth form and the only day I took off was my dads funeral. I still carried on with A Levels, still carried on. So when I say I am struggling, it is because everything has snowballed. I mean I am struggling. I miss my dad everyday and would love to see him again. I know he would never let me suffer like I am.
I am fed up of this pandemic being used as an excuse for the state of BCUHB and North Wales Mental Health Team. It is NOTHING to do with this pandemic. Get rid of ALL 60 healthboard directors, cut the salary and recruit 30 new directors. Reinvest the money saved into the frontline. Make it patient and frontline focus instead of manager and admin focus.
I'm sorry for all that you have been through Ceri. Believe me when I say that I have experience of trauma, loss and being pushed from pillar to post before I got to where I am now.
I won't bore you with the details but I lost pretty much everything I've ever worked for in 2014. As you know, loss is something that you learn to live with, not get over.
You are doing fantasticly well and brilliantly in the way that you have managed during this pandemic, especially after everything that you had going on leading into it.
I understand your anger and frustration at your medical situation. Remember it took 32 years for my disease to be recognised, and in the acute stage I was misdiagnosed and judged by my very own colleagues for 18 months. I held onto alot of anger.
What I want you to try to do is channel all that anger into you but in a positive way. Be angry, be pissed off, be frustrated but use the energy to make yourself feel better.
Ok right now, you can't go out which is pants, but can you use the angry energy to sort out a cupboard, make a corner of your home look different? Do your hair up? Dig the garden? Clean your place like crazy?
You might find that you can enjoy being creative. You might not enjoy the cleaning but once you take a step back and look what you have achieved then you'll be chuffed.
Use your energy.
When I get angry, frustrated and hurt about things (usually my fiance leaving me when I got diagnosed), I get into the garden and start getting it sorted. It sorts my head out and deals with some of the hurt. Not all of it, but it helps.
You've been brave before and looked after yourself by going to the dentist. Now it's time to do the same but in pandemic mode.
I can't write anymore because my wrists are so painful but I'll wish you a goodnight and a good day tomorrow.
Remember, we all care for you.
Go back and read that lovely card that was sent to you. Read it 100 times if you have to.
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