Rheumatology appointment after 2 years..... - LUPUS UK

LUPUS UK

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Rheumatology appointment after 2 years.....

23 Replies

So I finally had my rheumy appt. Nice lady doctor as I've been on hydroxy for 3 yrs now she noticed some pigmentation on my neck which I've had since childhood due to excema steriod creams and said it could be a side effect of having the meds was going to transfer me to dermatologist until I explained to her. She wasn't concerned about any of the symptoms I've been getting lately due to the sun having regular flares for last 3 months. We discussed contraception then she said the mini pill can cause a flare up as it can react with the meds so I told her told about my sterilisation next week she said thts good as I've changed my contraception in march this year from implant which she said is good to the mini pill as it was causing weight gain. Makes me wonder why my GP didn't say anything when the change was put in place. So she said she'll see me on regular basis now 😁 I'll believe that when it happens. Everyone says go to GP when not well I don't bother I just take paracetamol and bed rest...no point clearly wasting time!!! She also offered to give me some naproxen tabs to take instead of paracetamol which I refused again as only working part time already paying too much for meds as it is. I was told by my GP that the amitripline can only go up to 70mg I'm on 60mg She said it's over 100mg again wrong info. A few months ago my son said I should join bupa or something to which at time thought it wasn't needed but definitely going to look into it now has anyone else got that? Would like to know if better than GP? Thanks in advance 😊

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23 Replies
Ianrussell69 profile image
Ianrussell69

Would the hospital happen to be the royal Derby or the city as I still call it good rumi department but over worked and under funded I Was told to get a 3 month app and Was told at reception it will be at least 6 months due to waiting list that said all staff reception,nurses,doc all very good

in reply to Ianrussell69

Yes it is the staff are brill this doc I saw has taken over from Mr summers she is good.

PMRpro profile image
PMRpro

I think it is very unlikely that joining BUPA would be of any use - most private schemes will not cover for chronic illness or will cover it for a short time if you were already insured when it was diagnosed.

If you require multiple prescriptions ask about a pre-payment certificate:

nhs.uk/chq/Pages/2422.aspx?...

Once it is paid you can have as many prescriptions as you need in the period without paying any more.

Ianrussell69 profile image
Ianrussell69

Yes I totally agree pre paid prescription is a no brainier it's saved me a fortune

Thks guys for your replies.

Lupiknits profile image
Lupiknits

I agree about the prepayment certificates. I saved a fortune with them. Then I turned 60 and no longer pay! I think it's about the last thing any government hasn't upped the age for.

in reply to Lupiknits

Thk u.

Lexilourue profile image
Lexilourue in reply to Lupiknits

I don't think we in the US realize how lucky we are with our Healthcare System. Some of the Liberals want us to go to a single-payer healthcare, which basically means government run. There's a reason why people flood across the borders in Canada to come here to get Healthcare. I can call the doctor today and have an appointment tomorrow. That's not always true with the specialist but usually within a week or so and I don't have to get anyone's permission to see any doctor. Sometimes you have to get your primary care doctor to send a referral, but that's no big deal at all, is just to get your insurance to pay.

Silvergilt profile image
Silvergilt in reply to Lexilourue

Thankfully the evidence to support that claim isn't true - easily googled, but I won't go further with this as I suspect it will fall on deaf ears. I don't have the spoons or energy for debate: google.co.uk/amp/s/www.wash...

Pre-existing chronic illness isn't covered under insurance, if you can even have it. I sure couldn't get insurance when I lived there and as a result my care was minimal if not nonexistent. When I was in a car wreck and taken to hospital by ambulance, credit companies hounded me for the ambulance bill. Good times.

In any event I now also have a pre-payment card as I'm no longer covered by working tax credits. But if you can receive working tax credit in the uk you get a card of exemption for your scrips. Just a thought if you're struggling. Tax credits saved my hide more than once.

AgedCrone profile image
AgedCrone in reply to Lexilourue

The majority of people in the UK don't have any Private Medical Insurance& those who do - have it as a benefit of their job. Top of the range Private Insurance here is getting excruciatingly expensive. Last year subscriptions rose by about 20% & will probably do the same this year.

Also despite popular opinion Private Consultations in UK are often more expensive than in the US.

I lived in NY & my UK Private Insurance provided an"add on " policy whilst I was there & I was surprised at the price differences - treatment was cheaper than in UK!

Wendy39 profile image
Wendy39

Hello. I just wanted to warn you that private health cover probably won't work. I am in the position that my local NHS care hasn't been great. My husband has a family policy with BUPA with his job. They won't do anything for me - they will not monitor a chronic condition. I have lupus and OA bad in hips - wont cover. So we ended up going to London in April to the London Bridge Lupus Centre for a second opinion & treatment plan for my lupus and had to pay ourselves. So we are paying NHS contributions, private health care and per appointment in London for Lupus. Crazy! You'd be better of saving money for private appointments with a Lupus expert when you need them. Best wishes.

in reply to Wendy39

Thk u.

Wendy39 profile image
Wendy39 in reply to

My pleasure. I understand how difficult it can be navigating ourselves around the Lupus world.

Lexilourue profile image
Lexilourue in reply to Wendy39

I have a friend who lives in Australia and has Ankylosing Spondylitis like me, and she cannot take Humira until the government says she's bad enough. She's been diagnosed for 12 years and her condition is deteriorating. Her spine is fusing and bending which the Humera would stop or slow it down. The shots are about $4,000 a piece and you take two shots a month. There's no way the average person could pay for that without insurance. It's got to be so hard and so frustrating to see your body breaking down and the government won't let you have the medicine that would stop it!

Wendy39 profile image
Wendy39 in reply to Lexilourue

I appreciate that, very difficult situation for your friend. I cannot imagine how that feels. But our systems are very different. And our NHS is under immense strain and making these sort of decisions every day. New cancer drugs. Fertility treatments. Lupus meds, etc. I wouldn't want to make those decisions. My point was private medical insurance here in the U.K. will most likely not cover her lupus at all. Unless she gets a bespoke policy, which is price prohibitive for the majority of us. So, like I said, my family are faced paying 3 ways for our health care, NHS contributions, a private policy fee and private appt fees. There must be a better way of dealing with health care. I hope your friend gets the help she needs very soon. Best wishes.

Lexilourue profile image
Lexilourue

I can't reply to much of this since I know zero about the health care in the UK, but be super careful with amitriptyline if weight gain is a concern. I went on it about 1520 years ago and promptly gained 65 lbs, most of it was in my stomach! If you Google it you will notice it says it tends to add fat to your stomach pad! I'm already apple shaped and have a big abdomen and I went up to 320 lb! Luckily I really got serious about losing weight and right after my 50th birthday I had the vertical sleeve gastrectomy. I lost 50 lb and got down to about 190 lb. Several years later I decided I wasn't satisfied and after my 53rd birthday I went on a very strict diet and got to my goal weight of 150 lb. I am 5 foot 8 inches tall, so that is a very good weight for me. Like I said, I'm apple shape I lost 50 pounds and got down to about 190 pounds. Several years later I just side of I wasn't satisfied and after my 53rd birthday I win on a very strict diet and got to my goal weight of a hundred and fifty pounds. I am 5 foot 8 inches tall, so that is a very good wait for me. Like I said, I'm Apple shape, so I was wearing a tiny size 4 US jeans. I still wore a large top or medium in a unisex t-shirt. I don't know how those sizes or weight translates into UK numbers. I didn't notice a huge benefit from the amitriptyline, but I sure noticed a big negative!!!🌺

AgedCrone profile image
AgedCrone

Unfortunately Private Medical Insurance in the UK including BUPA regard RD & associated Auto Immune conditions as incurable & will not cover them for new patients. If you develop these conditions whilst already a member they pick & choose which condition they will pay for consultations for....& it's not many believe me.

Why don't you ask around for a Rheumy you hear comes highly recommended & get a Private Consultation? That Rheumy will then write to your GP with his suggested treatment. If you see the Private Rheumy a few times a year it might not in fact be as expensive as the monthly BUPA subscription might be.

Your GP might even prescribe the meds the Private Rheumy prescribes, altho the Rheumy would still be responsible for overseeing the meds.

I agree about seeing a GP...mine told me point blank she didn't know anything about RA when I queried a drug reaction & to go se my Rheumy. Thank goodness I have a brilliant Rheumy & the Rheumy nurses answer emails very quickly.

Hope you sort things soon!

Ceddy123 profile image
Ceddy123

Have you ever checked into the company that makes the medications some of them will give your meds free if you can't afford them not sure which ones but it's something to look into

in reply to Ceddy123

Thks for that ceddy123 will look into that.

I got phone call from health insurance company who work on behalf of met life insurance he did a quote of £29 a month to see private docs based at a Nuffield health centre locally. Told him I'll think about it. If I pay £100 excess up front then I can go there as many times as I need. Still think it's too much.

Wendy39 profile image
Wendy39 in reply to

That sounds too good to be true? £29 medical insurance cover with pre existing chronic illness and that's to see a Rheumy at the local clinic? Which insurance company? If it was really that cheap I think a lot of us would be interested. My recent private appt in London with lupus specialist was £190 from memory. Let me know which company. Wendy

in reply to Wendy39

Hi Wendy it's called health online for the private health insurance.

Wendy39 profile image
Wendy39 in reply to

Is it just for Rheumy appts? Or would it cover other specialists, such as dermatology or neurology? I might look into this.

in reply to Wendy39

It's tailored around your symptoms.

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