Can't be seen at RM

[sammyH]

Hello, a few weeks ago I asked a question about my friend whose current regime appeared not to have been working. Thank you for all your replies on that and she went to her next appointment armed with your good advice.

The consultant said that chemo wasn't working and she had run out of options with him and he would refer to RM.

When she spoke to RM last week they were giving signals that she may not be seen and today she has rung and they have told her she won't be seen and she should be seen somewhere closer...we live in Leicester.

She has said she will go private if necessary..she is really keen to take part in trials if she is suitable ( but we are worrying that time is running out)

My advice is contact consultant again and asked him to

1.clarify situation at RM...

2. can he refer her for private consultation there

3. where else is there for her to go more local where she can take part in the best trials??

Can anyone suggest anything else please????

Thanks

Sam

[Whippit]

Dear Sam

I just wonder whether The Christie in Manchester would be more convenient for your friend. They are the largest treatment centre in the UK and have a great number of clinical trials.

I'm aware the Marsden will not take patients from further afield if they cannot provide any different treatment than patients would receive in their own area.

I hope this is helpful. It's a horrible situation to be in if an oncologist says there are no more treatment options but it is a cue for patients to take part in Stage 1 clinical trials.

Hopefully others will have ideas for you and your friend.

xx Love Annie

[sammyH in reply to Whippit]

Thank you Annie....the only way for her to take part in a stage one trial though is to be referred to a Treatment center though isn't it?

I can't imagine why he has delayed things by writing to the RM if referral there was not possible. he is my consultant too and I find him infuriating!!

[Whippit in reply to sammyH]

As I understand the trials situation you can be referred to a clinican trial in a major centre from your local centre.

Target Ovarian Cancer have a database of trials for ovarian cancer. You could look this up and see if there's something that fits your friend.

It does seem strange for a clinician to talk about the Royal Marsden if a referral there isn't a possibility. The other alternative is to do what I did. Get an NHS address near the hospital you'd like to attend. You have to factor in whether you have the energy and means to travel back and forth and whether you'd actually need to stay overnight near the hospital.

If you're not happy with your consultant you could ask to be referred to another, or even ask if you can attend another larger centre. It doesn't seem to me to be a good thing that anyone would find a consultant infuriating and I know I'd be looking to move elsewhere if I felt that way.

Sending love to you and your friend. xx Annie

[sammyH in reply to Whippit]

Thanks again....

what do you mean by get an NHS address near the hospital? have you moved... or do you have someone local who you have "moved" to?

her partner lives and works in London...could she change address and if so I wonder how long this would take to get referred to RM via her new GP?

She has looked up the trials which she thinks she might be suitable for...but I guess she was hoping the RM would be able to correctly signpost her as the consultant doesn't' seem to be able to do that

I am really panicking..... xx

[Whippit in reply to sammyH]

Spot on. If your friend's partner lives and works in London she presumably has two addresses available to her and she could simply register her London address as her NHS address.

The process would be seemless. She would need her partner's agreement to use his address, then she would need to register with a GP at that address. Her consultant in Leicester could help things along by providing a reference to the Royal Marsden. The GP in Leicester can also provide a print-out of her medical history to take to the new GP.

In doing this there are a number of considerations, not least of all the cost and effort of travelling back and forth between Leicester and London if your friend wishes to spend the majority of her time in Leicester. There's also the practical issues of overnight accommodation in London where appointments are made on consecutive days but that presumably would not be a problem, and the quality of life issue. Is it a good use of one's time to be constantly travelling back and forth.

Another very big consideration is whether the Royal Marsden would be able to offer any different treatments to those available in Leicester. I can't imagine any oncologist telling a patient there are no more treatments available if that is not the case. From your description of the conversation with the oncologist they don't appear to be very helpful or forthcoming about possible clinical trials. It may well be there are no suitable trials open at the moment. Stage 1 trials are open to very small numbers - perhaps 10 - 20 patients. I think if I were so completely demoralised and disappointed with my current oncologist I would ask for a transfer to another specialist in the same hospital or one nearby.

There is no reason why your friend should not be referred to a Stage I trial in another centre from her current hospital but you have to consider whether this is feasible or desirable. I think I would want to have a long chat with a research trials nurse to understand what is involved in Stage 1 clinical trials when it becomes my only option.

Hope this is helpful. Happy to chat by PM or phone if it's helpful. xxx Annie

[sammyH]

her consultant has emailed her the following....

"Happy to refer you as a PP, who to?

Don’t know of a suitable trial for you – Marsden was my backup option".

She is having to do all the work...has anyone else had this problem? she looked up the trials on the TOC website...told him...he referred to RM....RM won't see her...she goes back to him ...and he scratches his head!!!

[thesilent1 in reply to sammyH]

unfortunately the consultant is saying that down to cost! If he makes the referral then the trust he works for will be billed by the RM. If the patient goes as a PP, then she is liable for the cost. Its awful when this attitude is taken! Who is he to put a price on a life, but he is probably following his Trusts guidelines on tertiary referrals. Ann

[thehusband]

Just to throw my pennies worth in......Annie, i know you say 'you cant imagine an Oncologist telling a patient there are no more treatments available if that was not the case'......however, Christina was told by our Oncologist after 1st line treatment that 'nothing will work' and it isnt worth having more treatment. We persuaded her to do 2nd line treatment, when that failed she once again told us 'thats it, no more treatment available'.....

After pushing and shoving she agreed to refer us to RM for what she said was 'the possibility of a phase 1 trial'.....when we got to the RM they said 'many more options available' and proceeded to give Christina gem/carbo, which was what we had asked our original Onc for.

So whilst they shouldnt say it.....sadly some do.

[Hidden in reply to thehusband]

Incredibly sad. Xx

[ScardyCat40]

I can recommend my previous consultant at The Christie he was always very positive and it might be worth considering St James in Leeds as well?

[thesilent1]

Like Annie, I was thinking of The Christie in Manchester. Ann