Dulcie, I’m astonished that you’re still waiting for your GP to refer you. As I mentioned earlier, the NHS Constitution gives patients a right to be referred to whatever hospital they like, so your GP has to refer you irrespective of what the PCT/GP Commissioning Body would like.
Having said that, you/others should be aware that, while there is a right to be referred, the choosen hospital is not obliged to see or accept patients. But if someone has lost confidence in their local hospital, I doubt this would happen.
If your GP say’s the PCT will not allow referral, ask him/her to put that in writing, and take a copy of the letter together with the NHS Constitution to your local PALS or Citizens Advice Bureau. If it was me I would also contact my MP and local Press (but that’s because I’m bolshy).
Link to NHS Constitution: nhs.uk/choiceintheNHS/Rightsandpledges/NHSConstitution/Pages/Yourrightstochoice.aspx
I am seeing my doctor tomorrow…and i want an answer tomorrow! Thank goodness i now have other options if needed… I must admit my strength is not holding up …or my mind…i went to pour a cup of tea …into my make up bag…and that isn’t stress…just tiredness and absent mindness…Both of us a getting weaker and i can’t think too far ahead…i need a brain to fight with!
Sorry about the moan…
Dulcie xxxx
Oh Dulcie-so sorry you’re going through this. Its really hard to be assertive when you are feeling at a low ebb.
If you are feeling up to it I would second the suggestion to contact your MP if needed after any communications with your GP/PCT-from experience I can tell you an MP’s letter is dealt with on a senior management level.
Fingers crossed for you tomorrow x
Dulcie good luck for tomorrow.When I got my referral to the marsden the marsden offered me an appointment very quickly.Like the others have said contacting your mp would be a good idea if your pct don’t come through with the funding,and be sure to enforce the urgency.Hope you can get to the marsden soon for some caring treatment.Sending big hugs and take care xx
WOW ladies xxxx hugs all round …i just got the news! I got the funding to go to the Marsden…can’t believe it …especially after yesterday!
I was told that the cancer may now be in the wound site…and Xmas …no gaurantee’s…!!!
I have a dear friend from the site …coming with me and another lady who had offered to meet me in London and take me there and be with me!
So many WONDERFUL kind helpful ladies here…bless you ALL!
Dulcie xxxx
Fantastic news Dulcie and what a shame you have had to fight for this. Wishing you all the best.
Dawn
xx
Hoping all goes well for you Dulcie. We are all rooting for you and holding your hand while you go through all this. Have you a good Breast Care Nurse at your hospital who could support you more while you are under all this strain? I speak to my Breast care Nurse frequently, in fact I hope to see her on Friday when I see my Oncologist, and if I want to know something she can do it for me rather than trying to do stuff by phone and going from piller to post. It is very stressful when you are having treament for cancer and I fully understand your experience of pouring your tea. Your head just does not function as quickly and everything is such an effort. But we are here for you Dulcie and know just how stressed you and your OH are.Hope your referral can help with any future treatment. Hugs, Val
Thank you so much xx I am starting to have regular visits from two district nurses!
I will let you know how i get on!
Dulcie xxxx
Good morning…i was astonished at the speed the Marsden have responded to me ! I received three phone calls from them next day…and already ALL my scans and details are with them …so no delays …to put anyone off applying to go! I think they are going to be so kind and listen to me too! I shall put all my trust in them…i know they might not be able to extend my life by much…but at least i get a shot at it!
I wish i had done this at the begging of my cancer…to late to ponder now!
I am a bit concerned …i am about to start the ‘peachy’ pills after weeks of delay…now if i take them…that makes me illegible for trials… the Marsden have said to go ahead and take them anyway… but i won’t let any se’s stop me from attending!
I am most supprised that my surgeon has suddenly requested to see me this week…as he said he didn’t want to see me for a year! lol… thats a long time for me! I wonder why …when i have been left with a mx that is in a bad way…with now a possible spread plus skin mets…well the onc ‘casually’ said so! …so not sure about ANYTHING right now!
Dulcie xxxx
Hi ladies…well we went to the Marsden as planned …but i did not see the proff so i felt short changed! I saw a young lady doctor that took everything down in writing about me and she looked at my left leg…which i am suddenly in great pain with…then this consultant came in…rather surly and brusque…and he tells me that i am a very sick woman…( i went all this way to hear that) and he didn’t think i would benefit from doing the travelling to London…he said the leg is quite possibly cancer…and probably in my brain…and the red across my wound site…it is now half way across the other breast…that is all cancer too! So he suggested the Xeloda after one go was not working …for me…and he suggested a CT scan and a bone scan…and pallitive pain control…
So after all that…we got a taxi to Harrods and i got into a wheelchair…and off we whizzed around the store. I t was very disappointing…so after a take away as we where so tired…and some whiskey …the next day we went to Oxford St…and enjoyed that more!
I now have a large swelling in the left hand side of my back…which is agonizing…and this morning my other knee is ‘tweaking away’ so i must be falling apart…i am not sure if i want to have the scans…it will only be more bad news…and i am going down the Holistic route next week…
Do you think i should have the scans…? advice please …
Dulcie xxx
Oh Dulcie, I really hoped that you would have a better time after all the effort you went to change your treatment centre. I’m not sure how the Consultant can assume so much without the relevant tests/scans etc.
I think that you should consider getting the scans so you know what you are dealing with and which will inform any conventional treatment which might help you. I know there are so many posters who live well with secondaries.
I also wondered if you’d been in touch with the Penny Brohn Centre who do residential weekends on holistic methods. I was thinking of booking myself in on one at some point.
Take care x
Dulcie, I’m really sorry you met with such a negative and brusque doctor, but think you should stick with it and have the scans done to see what the Marsden can come up with. Was he an expert in metaplastic Breast Cancer? If he wasn’t, and it was me I would ask to speak to someone there who has experience in that type of cancer. In the meanwhile, try and keep your chin up.
Dulcie
Have just read bout your recent problems with great sadness. I’m sorry that you feel your treatment has been substandard. It occurred to me that you may benefit from seeing a Marie Curie or Macmillan nurse. This will have to be arranged via your hospital or GP, but they are amazingly helpful and can visit you at home. I have recently started seeing a Macmillan nurse and they can help with pain medication, organising the prescription directly with your GP, as well as all types of emotional and physical support. They also provide a call out service if you are in difficulty.
I hope this may help.
Alison
Thank you for your replies …i am ‘drugged’ up to the eyeballs at the moment with a new pain i got at lunchtime…all down the left side of back…i was on the loo when i heard something ‘crack’…the pain is excruciating…GP told me to dial 999 anytime if it gets any worse…
Lemongrove the Marsden did not invite me to go back to them… i was reffered back to my own hospital for scans…
Dulcie xxxx
Hi Amore. We have already spoken about this elsewhere and don’t want to be too public on here. Sorry you are in such pain. Thinking of you x
Dulcie, I’m so sorry to read this. I cannot even imagine how upset and disappointed you might be. Are the Marsden going to look at the Scans taken by your Hospital? I agree with Tawny about asking for a Macmillan Nurse to advise and support you. Maybe they could offer some advice about possibly getting an expert in metaplastic BC to look at your next lot of scans to offer advice.
I often think it would be helpful if BC Charities could set up an advocacy service, matching patients with volunteer advocates so that patients who perhaps feel to ill or worn down to argue with medics, have someone to help fight their corner. No doubt people on this forum will think it’s just Lemongrove moaning about things again, but it’s sickening to read about people who need treatment and support at the most critical time, and are unable to get it.