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West London Treatment for a Newbie

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It’s been very uplifting reading a lot of these threads. The positivity and support from you all has been amazingly heartwarming to one another and really assured us on certain concerns. That said, we need to arrange our next steps forward...

My fiancé was diagnosed with CML shortly after landing for our holiday in South Africa. She was admitted into hospital with severe leg pain (the reason for the leg pain is unexplained/unknown, but perhaps it was divine intervention for an early diagnosis). She has been treated in Cape Town for the last 3 days before being released to fly home having seen her white blood count rise from 184 to over 200, then down to 150 after 15 hours on Hydrea.

We’ve been cleared to fly home and hope to this afternoon, however we need to go through the process of getting referred by our GP for the NHS to raise a case, including having the reports finalised with confirmed test results and sent over from Cape Town to our UK GP. I know it will be resolved in the next couple of days, but feels like we are at step minus 1 and I understand it takes ~2 weeks from documentation to referral.

To overcome this, I’m trying to expedite that first appointment by booking privately. We have one tentatively booked with Dr Ian Gabriel on 24th privately, who also covers other NHS clinics. I was concerned by the delay, but it sounds like she’ll need to continue on the Hydrea for the timebeing anyways.

We are fortunate to live in West London, where I hear many hospitals specialise in Leukaemia. Are there any recommendations for haematologists or clinics, that operate both privately and via the NHS? Or are we onto a good thing with the above? We’d look to transition our case from private to NHS once everything has settled. We have read Hammersmith hospital is one of the best.

Please can we have some opinions. That would be really appreciated.

Many thanks,

Ben

The NHS can act very quickly. When I was diagnosed in July, I visited the GP surgery for tests on a Monday and got results and a telephone call from the GP on the Tuesday. I visted the hospital for genetic testing on the Wednesday. I then waited nine days for laboratory results and diagnosis. In your case,  you will be much further forward. Personally, I could have achieved no more if I had used BUPA. I think that you will be surprised and reassured by the NHS's excellent speed of response. 

If you're in West London the Hammersmith is a no brainer. Prof Jane Apperley's team are very highly respected. Dr Dragana Milojkovic is one the consultants there; she did a talk at the September conference which you can see on the link from the homepage on this site. Can you not e-mail your UK GP and try to get the ball rolling?

Hi Ben,

I have 13 years experience of both NHS and private healthcare funded on insurance and in addition was initially dx overseas in Bangkok so had the issue of whether it was safe to fly home as levels of blood viscosity had to be assessed prior to permission to fly being given.You do not say if you have private health insurance because if you dont it will be an expensive process going ahead on a private basis;it is not just the cost of the consultation but if they wish to reconfirm the diagnosis via a bone marrow biopsy that would be £600 plus and if they issue a private prescription for one months medication say imatinib 400 mg it will be at least £2000 and nilotinib will be similar;some private hospitals put a profit margin on drugs dispensed so beware.I read that ASDA pharmacies would be the cheapest if one had to pay for a private prescription.

Yes I agree Hammersmith is your best option as they have perhaps ten or twelve specialists in the CML field.Why dont you call your GP and ask for an immediate NHS referral to Hammersmith as you already have a partial dx from SA?

It looks as if your SA doctors are on the right lines as oral  Hydrox  which is  chemotherapy will hopefully reduce your white blood score in the interim.

In my case I was treated under insurance for a year but initially it was uncertain if the insurers were going to pick up the bill for the imatinib;then I transferred over to the NHS using the same consultant but the process was not simple  as there were lots of forms and also some queries as a Hospital Trust taking on a CML patient treated previously on a private basis is landing themselves with costs of between £25-30 k per annum.

The quicker you are on a tki the better-I wish you well

John