MP got back to me yesterday - not positive news

[Wendy39]

My MPs secretary telephoned me at home yesterday - she woke me from a nap, so goodness knows what I sounded like when I answered the telephone.

She says that he has looked into my case and received a response from my local heath board, which was no surprise tome, it goes along the lines of, there is a Consultant looking after you (I did point out that this man is a GP with a specialist interest, and not a Consultant), he is following the plan left by my Knight and that if things don't work out, they will reconsider referring me to my Knight, out of area.

She seemed lovely and we did have a frank discussion about living in such a beautiful part of the world but what the actual consequences are of living in a sparsely populated part of the country are. It's gorgeous here but we do pay a price.

I told her my friends in Cambridge, one doctor and one nurse, were horrified by my plight, as living and working there in Addenbrookes they take it for granted that everyone has the same access to specialists and a high standard of care and support.

She ended up by saying that at this stage my MP feels that he will do more harm than good if he presses further. I am seeing the GP WSI in January and I am to report to them then. In the meantime they will mark my file dormant.

I am upset. I thought they might fight a bit harder.

My husband also pointed out last night, that last time he and my son did a park run on a Saturday morning, both my MP and my reluctant rheumy both were there taking part - so he thinks they at least know each other. Hhmmm.

Not a happy bunny with both sets of news.

Oh well, I have my last appointment for the year with an Consultant Orthopaedic - spines - on Monday 19th.

I think the MMF might finally be working. I shouldn't tempt fate but no headaches for over 2 weeks now. The diarrhoea can still be an issue but I am coping by limiting as much as possible how many fruit and veg I have a day. I don't like doing that and it goes against all my instincts but it seems to be the only way. Plus given that option or taking steroids, it seems to be the best option. My wrists are aching less. But my hips and spine are not good.

Since the children went back to school in September it has been so busy with appointments - 2 dermy, rheumy nurse, neurosurgeon and lots of GP visits for monthly bloods, piles and urine infections etc, I am hoping things will calm down in the new year. Ha ha. Am I kidding myself?!?!?

[Barnclown]

👋👋👋👋 hi wendy

My heart sank as I read about your MP's response. How could you not be upset! Well, that's one skirmish over...you know where you are with him now. Knowing you only even a bit, am fairly certain that won't be the end of your campaign to get the specialised care & attention you totally deserve no matter where you live 👍👍👍👍

Am glad you're getting along reasonably well with myco....so far so good...And am so identifying with your attitude to excluding veg & fruit due to gastro issues (SNAP)

You have been going through an especially rough & complicated phase....so many appts on & on is very hard to tolerate. 😏 I HOPE things do calm down in the new year ....even after all these years/decades I tend to hope similarly...and, hey, I have had relatively good patches 🤗...And, haha, medics like to talk about ours being relapsing remitting conditions

Sending you lots of love

Hoping for news re your spine consultation

Take care

🍀😘🍀😘 coco

[maggielee]

Hey Wendy sorry to hear mp simon not taking a more supportive roll or is that no support 😞 Don't quite understand how allowing a doctor follow a p!an works for you, might as well have your GP follow the plan closer to home at least. Glad to hear that u have had a break from headaches and maybe a short break from doctors nearing Xmas.

I have to play my rereferral to rhemie before I can join in any complaints about lack of lupus specialist support in our NHS ...I agree it will be interesting to compare a specialist in London to our local docs, he definitely picked up on my secondary auto immune altering one of my meds and recommending further tests....

Big hug you will have your hands full with the upcoming holidays, good luck with your next appt. ML

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Makes you wonder what MPs will fight for. We all agree the NHS should be providing the same care where ever we live and that's what he should focus on. Hope things look up for you in the new year. I agree with Coco remission is not a word I choose to use for us, or flare. We have general crud and then worse. Tests don't show that, what ever area they are done in.