Post from anon user
On behalf of the large number of blood cancer patients from the Scottish West Highlands and Islands in the care of NHS Highland, I write to seek practical advice. We have been told that our regular consultation service with our haematologist is henceforth withdrawn from our local hub hospital in Oban, Argyll and that from now on all patients will be required to find their own way on a regular basis to see an appointed haematologist in a Glasgow hospital. This will involve an additional 3 hour journey each way. Many will have to use public transport which in summer is generally crowded and, depending on appointment times, may well require overnight stays. Most of the patients are obviously well above 70 years of age, many are frail and all are vulnerable. The reason given for the change is lack of haematologists able or willing to undertake regular consultation visits to Oban hospital. Considering that we are dealing here with one of the most vulnerable groups in society and are forcing them into regular ordeals of travel, does anyone else with an understanding of leukaemia think that this retrograde change in treatment service is unacceptable? If so, any ideas on how we can get the decision reversed? I have written to all relevant politicians and am meeting my local member of parliament and health secretary next week. Any tips on arguments or means of pressure appreciated!
Oh, I am so sorry to hear your news I will copy your post to @BloodCancerUK for you in case they can come up with any ideas.
Perhaps another angle to be stressed might be the direct and indirect financial implications of having to travel so much further for all appointments and tests.
You also talk about getting to appointments, but there are probably the same financial and other implications in getting home again.
Perhaps not all patients are over 70’s yr old and all patients might also be carers for young or elderly.
Some might loose wages as well.
I wonder if transport links are as good in the winter.
People having day treatments patients might not feel up to such a long journeys to the hospital or home.
I hope your discussions bear fruit and please let us know how you get on.
Look after yourself
Gosh that’s a real challenge, I know face to face consultations for regular reviews are very rare for most of us now but even having to make that journey occasionally would be a nightmare and certainly for treatment. Perhaps a campaign for a mobile service or rotational service? It’s certainly a challenge when there a fewer doctors and such a large distribution of patients across a large area.
I certainly feel your pain literally….
I live in Dumfries and had my treatment for Acute myeloid leukaemia (AML) in Glasgow, not so many miles away but a good 2 hours each way. I had a Stem cell transplant at QEUH in April 2022 and have only had one face to face appointment there since, my bloods are taken at Dumfries hospital and I have a chat with the Specialist Haemotology Nurse then a few days later I have a video call with one of the transplant team consultants in Glasgow, they inform Dumfries and my GP if I need any medication changes etc. It all runs very smoothly and has saved an awful lot of travelling. Hope something can be arranged for the Highlands to help.
Hi since covid all my appointments have been by phone . I have lymphoma. I have had two face to face appointments one last year year year to review a new symptom and one last week to follow up.
That’s such a lot of additional stress isn’t it! It sounds like you are doing all that you can. I can see @Erica has copied in the blood cancer nurses to.
I really can’t imagine having to travel that far. Very unfair.
Please let us know how you get on
Reply from anon user
It helps to hear that others like you think that this change is unfair as I seem to be on my own in complaining and trying to do something about it. A bit of a lone crusade! Many thanks, Nichola75. I ain’t giving up!
Is there anyone at the top of blood cancer uk who has a bit of political clout? A bit of quiet political support would probably help.
I will copy your post to Blood Cancer UK for you @BloodCancerUK
Hi, thank you so much for taking the time to share this and for raising your concerns. It’s important for us to hear them and we appreciate the points you’ve raised. I’ve forwarded your comments (anonymously) onto our Policy team for their information. It sounds like you’ve been so proactive and have been contacting all of the right people. If you need any support or want to talk it over please do give us a call (0808 2080 888).
Take good care.
Wow that’s far!I have done that trip on both the Scottish City Link bus and train and it’s over 3 hours one way from Glasgow to Oban.However, sadly, I don’t know what you can do apart from contact the various political representatives of the area.I was talking to someone from the Shetland Islands with a rare cancer but I can’t remember what it was and they had to travel to Edinburgh to hospital presumably by plane.Some hospitals might have a place for distant patients to stay ?These sort of trips dwalf my 1 hour trip to the hospital.
Hello, what a nightmare! All your points are relevant, most particularly having to travel on crowded public transport when neutropenic or immunosuppressed. I have been incredibly fortunate following my own allogeneic stem cell transplant - my journey to the teaching hospital is only about 80 minutes (but would be well over 3 hours on public transport). I have maintained face to face consultations for the exact reasons you state. It is not possible to assess lymph nodes, nor extent of graft v host disease of the skin by video link. I’m surprised you have no specialist haematology nurses - we have four, and can contact them by phone 8-5, or by text. We also have a 24h line to acute haematology for urgent advice. The nurses have been incredibly helpful for me over the last three years. As an ex-consultant myself (not haematology) I understand the argument for withdrawing the haematologist from Oban, but frankly I think your case is extremely strong. You could ask whether a nurse specialist could do the clinics - they could almost certainly manage most of the straightforward stuff, thus minimising the need for travel to Glasgow. Best of luck with your endeavours!
Here is a link to a video I have from Lymphoma Uk
I also have downloaded a leaflet from the British Association of Dermatologists entitled “How to check your lymph nodes”. Link is www.bad.org.uk/leaflets.
Thanks so much @helenfwallace that guide is really helpful.
Look after yourself
My lymph nodes are always up particularly around the groin.The rare T Cell Lymphoma I have, Mycosis Fungoides,sends them up all the time although it doesn’t seem to have infiltrated them based on biopsied nodes so I don’t know how it does it.In fact about 8 days ago I noticed 2 lumps on my right knee and they send the right groin nodes up and I think that they, the lumps,are something to do with the Mycosis Fungoides as I am about 99 percent sure that they aren’t insect bites or a bump on the knee.I have hospital on the 21st so I’ll see what they say about them.I thought perhaps something from the knee structure might have popped out as I like my hiking but from the other knee I see that the area where they are at is just bone with nothing to pop out! Probably Mycosis Fungoides tumours although Synovial Sarcoma looks similar too . However what would the chance be of having 2 rare cancers as Synovial Sarcoma is even rarer than Mycosis Fungoides:3 in a million vs 5 in a million.
Yes, get the new lumps checked out at the hospital. It can be difficult to identify skin lesions from images on the internet. May I suggest you take a photograph with your mobile phone and then you can see if it changes in anyway between now and your hospital appointment.
Hi @Kevan7 yes, I always get anxious about any lumps and bumps I find, luckily you have an appointment booked for the 21st.
If you have further concerns do contact your GP or consultant in between
Please do let us know how you get on and look after yourself.
Lots of good advice has been given by our forum members.
Please keep us updated on how you get on.