Getting desperate!

[hall2]

Sorry but I think this will be lengthy and I posted about this issue a few weeks ago. I was diagnosed with ET about twenty years ago and recent further tests confirm me as Calr2. Due to the fact that my ex husband was in a private medical scheme Ihave been treated privately and when we split up he agreed to carry on paying, I have seen various haematologists privately over the years. I've been on aspirin all this time and I'm now 63 nearly and the platelet count has been steadily increasing. At my last appointment nearly two months ago it was about 780 and the guy who I've been seeing for the last three years or so said it would be best for me to go on pegasys and due to the cost (which it would not be fair to expect my ex to pay ) he said he would transfer me to the NHS. He said despite my age I am entitled to this drug. He told me I'd here from his secretary the following week. After not hearing for a month I started to chase. I phoned and emailed his secretary at the private hospital who said she'd chase him up but no response. I went to see my GP who was aware of the situation due to a letter from the haemo and he advised me to contact the haemo department at Leicester Royal Infirmary who would put me through to his secretary there. This happened and she was very good and checked but there was no trace of me in the system so he hadn't done what he said he would do! I emailed her the letter he sent to my GP stating that he would transfer me to the NHS. Followed this up a few days later with another phone call to her but he hadn't replied. Emailed her and phoned a few days after that and still no reply from him. Phoned secretary at private hospital again and she said to write him a message that she would forward to his personal email but some days later still no reply! I feel totally let down by this guy and I thought I was getting on really well with him! I have now booked another appointment with GP on 30th April to get a fresh referral to Leicester Royal and I'll have to wait weeks. I am not currently being monitored! If this guy 8 weeks ago had just said go to our GP and get a referral I would have done so! I have some questions. Is anyone on here being treated at Leicester Royal? He said I'm entitled to get Pegasys even though I'm over 60 and Hydroxy is the usual first line treatment for older people. I really want to try Pegasys but I know it's a bit of a post code lottery! Does anyone know what the situation regarding Pegasys is in Leics? If someone can help with this I'd be grateful. Sorry about the long rant but I'm really fed up! I know we can't name names on here but it's very tempting to! I hope you all have a good Easter.

[shiftzz]

I am at Leicester Royal, have been for nearly 5 years, There are a number of consultants, some are ok, very matter of fact, one I see on a regular basis is very good.. The clinic co-ordibator is very good... All venesections are done at Leicester General , ward 1, the staff there are great.. Your consultant suggested that " I'm entitled to get Pegasys even though I'm over 60 and Hydroxy is the usual first line treatment for older people." I was on Hydroxy for three years and then on a combination of Hydroxy and Pegasys.. Pegasys is slow to work in my case.. I wonder if your private consultant is working in Leicester Royal?

[hall2 in reply to shiftzz]

Hi thanks for your reply. Yes he does work at Leicester Royal. I've heard treatment there is very good, I just need to get into the system! I had a BMB there last year that he organised and I had to do a lot of chasing up to make sure that happened even though he said he would do it!

[shiftzz in reply to hall2]

Treatment is good in general, but, they can be very late in clinic, the two senior consultants can be very dismissive..

[Skeeter1956]

Might be an idea to get your GP to put in a referral to the Leicester hospital . You should then get an appointment through post . If you get seen any quicker through previous heamo it will be a bonus .Good luck .

Cheers Skeeter

[hall2 in reply to Skeeter1956]

Thanks for your reply ive booked an appointment with GP for after Easter?

[JackLina]

I am in the North West and 67, been on Pegasys for almost one year following my unbearable reaction to hydroxy. The availability varies from hospital to hospital, it seems.

When I went to Liverpool for a second opinion I was told I was lucky to be on Pegasys because this consultant's hospital would not allow him to prescribe it for anything but extreme cases such as young, pregnant females.

I hope this helps.

[hall2 in reply to JackLina]

Thanks for your reply it does help. I just hope I can get Peg! I’ll try and insist on it!

[skodaguy]

I hate to say this as a former GP. I was told very early in my education if you say you are going to do something do it or you will never be forgiven. Clearly you need to crystallise his mind. So stand up for yourself and send an official complaint to the NHS, whichever private hospital group he is involved with and the GMC. Strong action but when you got divorced you stood up for yourself so don't be afraid to do it again.

[hall2 in reply to skodaguy]

Yes I probably should complain but I'm not sure where I stand on this! He has done his job as a private consultant, such as organising blood tests, analysing, results, giving me feedback and writing to my GP with the results. Even though he has said in writing he will transfer me to NHS care and hasn't I'm not sure that I'd have a valid complaint. I don't know enough about these things!

[Chez1947 in reply to hall2]

You do have a genuine complaint, have you tried going to his surgery and tell him face to face, it's your health he is not doing what he said. He was fine all the time he was getting paid, Your local GP can refer you.

[hall2 in reply to Chez1947]

Hi thanks for your reply. If I go to see him I’ll have to pay him again just to remind him about what he said he’d do! I’ll have to sound this out with GP. I know I have a complaint but also as a private consultant he is under no obligation to refer me to NHS even though he said he would so I think I could be on shaky ground as far as complaining is concerned? Unless someone can advise me otherwise?

[JackLina in reply to hall2]

I would say 'of course you have a valid complaint'. It's disgusting, in whatever circumstances.

Ehen I came off Hydroxy, due to total intolerance, it was 8 weeks before my haema saw me again and I managed to get on Pegasys. I was so relieved that he had allowed me to have it that I kept my mouth shit but I so wish I'd spoken up. He has turned out to be just a writer of the next prescription based on basic bloods. No matter how many times I ask, he has never explained anything to me. Stock reply is 'see your gp'. well a fat lot of use that is when nobody at my surgery know anything about the condition. Even he appears clueless, so what does he expect.

I wish you all the very best in pursuit of best solution. Many hugs coming your way. x

[hall2 in reply to JackLina]

Thanks for your reply and support. I think I might look into going ahead with a complaint at least to see what the procedure is.

[lavender007]

nhs.uk/conditions/social-ca...

Hi there try this link for help online nhs complaints proceedure is available.

Good luck Lav007

[hall2 in reply to lavender007]

Thanks very much I'll look at that.