Havent been on the board for a while, hope everyone is doing okay… even better than okay!
Here’s a question. Keep hearing that you need a Chronic lymphocytic leukaemia ('CLL') specialist when you start treatment, not a haematologist, but how do you get one, who do you ask? Do you turn up to the haematologist you’ve been assigned and ask him/her, back to the GP for a different referral? I dont have a ‘team’ as such or a specialist nurse (am on watch and wait). I’m in the UK, so it’s the NHS - am a bit baffled and its been bugging me, so I thought I’d ask. Thankyou!
Not sure where reading that you need a specialist Chronic lymphocytic leukaemia ('CLL') Consultant.
From my experience many years ago working in the NHS and knowledge of my own Haematology Team, Haematology Consultants typically have a special interest in an area.
When I was first diagnosed with Myelofibrosis I was primarily seen by the Consultant in the team with a special interest in this and other Myeloproliferative neoplasms ('MPN') conditions.
Once it progressed to Acute myeloid leukaemia ('AML') I was seen primarily by another Consultant who’s special interest was Leukemia.
Of course all the Consultants could cross cover as all patients would be discussed at Multi Disciplinary Team (MDT) weekly meeting. Obviously more discussion when patients going through intensive treatment or post transplant recovery.
Hope that helps and maybe @Ceri_BloodCancerUK might be able to offer additional thoughts from the Blood Cancer Nurses.
I believe that the closest Chronic lymphocytic leukaemia ('CLL') specialist to me (I’m in York) practices at a hospital in Hull, while my current consultant does not have Chronic lymphocytic leukaemia ('CLL') as his specialism. There seems very little link-up or crossover with departments/hospitals etc in the NHS so its not clear how I get to see the specialist. I can imagine being automatically logged with the current haematologist just as a matter of course but I could be very wrong. Perhaps being sent to a specialist in your type of blood cancer happens as part of the treatment protocol.
I can bring it up when the time is right, it was just bugging me and understanding it better seemed a sensible bit of info gathering.
Hope you are doing well in sunny Scotland. Still cant believe I made it to the Isles this year!
What I would also add to what I wrote previously is that all the Haematology Consultants tend to have extensive networks that they can tap into for advice about treatments.
I know someone I met who had two conditions which they were having trouble getting under control had Consultants coming up from London to see him in Inverness.
Conditions were so rare he referred to himself as the lab rat.
I had someone with Chronic lymphocytic leukaemia ('CLL') a couple of beds away from me during one of my stays for treatment who was well cared for by the Haematology Team.
I’m sure if your Consultant felt it necessary he/she would reach out to get specialist help.
Hopefully you enjoyed your trip to the Western Isles. I’ve not managed to go over since diagnosis in October 2023 about a month after our 6th visit
I’ve never been referred to or asked to speak with a Chronic lymphocytic leukaemia ('CLL') specialist
That said - i don’t know if they exist, maybe they do, but my experience was GP referral to haematology department at York Hospital before then being referred back to GP post diagnosis and now remain on active monitoring.
If there is such a specialist - I’d love one - just to have that dedicated support structure there.
That having been said - the combination of diet and exercise and good rest is probably what they would advise I guess.
Assume this is everyone’s else’s experience ?
Don’t forget the coffee mornings at the Levenson Centre - would be lovely to have a chat
I hope life is treating you kindly and you are coping somehow with all our multiple heatwaves this year. Am grateful to be in York, my parents are in Somerset… eeeek!
By specialist I mean someone who has deep knowledge of the Chronic lymphocytic leukaemia ('CLL') environment and is up to date with the latest research. its basically their specialist subject amongst all the blood cancers/disorders (some focus on anemia, some are into childhood cancers etc). As I understand it, it isnt someone we are referred to initially ( it isnt about diet/exercise etc) but the person who offers the most up to date recommendations for drug protocols. As @DuncanB says, it could be that if we need treatment then the current consultant recommends others with the most up to date knowledge and we are passed to them.
Its on my list @GenesisDevice, be good to meet you and share tea and some of that wonderful cake.
It’s not hard to be confused by this—the NHS system isn’t always very clear.
In my team, there are a couple of haematology consultants and they all seem to do everything! They all work as part of a wider multidisciplinary team and follow national guidelines, so decisions are always shared.Occasionally I’ve seen other team members, they all have all of my information and I have the CNS nurses details ( although they change all the time)
At your next Watch and Wait review, you could ask your consultant how Chronic lymphocytic leukaemia ('CLL') care works in your hospital, and ask if there’s a Clinical Nurse Specialist (CNS) attached to the department who you can contact between appointments.
Unfortunately, I don’t have watch and wait reviews, never even heard of one, and there are no clinical nurse specialists here, I’ve already been down that rabbit hole (am in Yorkshire). I think that all will be revealed if I need treatment and that there is more working together and across hospitals than I am used to.
