Advice on moving area to Nottingham

[GRMat158]

It seems that we maybe moving in the near future and I will require to change my consultant/hospital. Is there anyone who has been looked after by the department at Nottingham who can enlighten me on what it is like?

Many thanks for any help.

[Senecio]

Some years ago, I moved from Peterborough to Harrogate. There are many people you need to notify when you move, but absolutely key among them is the GP. Register with a new GP (you may need to do some research to find which people rate highly), and they will refer you to a CLL consultant in the local hospital. If you are unhappy with the decision, you can ask to be transferred to a different major centre.Personally I have been very happy with my new healthcare providers.

John

[GRMat158 in reply to Senecio]

Thanks John - certainly a priority will be to find a GP - although that will be more local to where we are going than Nottingham is - as spotted below I am on a trial and Nottingham is a centre which is participating. My experience s that healthcare providers everywhere are good - just looking for any insights into what could be my new family of carers 😀

[mrsjsmith]

Sorry I don’t know anything about Nottingham but checking I see you are on a trial so I would probably start with discussing with your current consultant. When I changed hospitals my GP did the referral and my current consultant also wrote to my new one introducing me.

Colette

[GRMat158 in reply to mrsjsmith]

Thanks Colette - I am already discussing this with my current consultant and one of the reasons for picking Nottingham is that it will be the closest centre that is currently participating in the trial - so the switch should be relatively easy.

The motivation for my post was just to see if there were others on this list already at Nottingham - obviously I am very used to those who have been looking after me for some years now - so there is a little bit of "fear of the unknown" about moving away.

[mrsjsmith in reply to GRMat158]

Good luck.

Yes I have been at the same hospital for years now. Sometimes I feel it’s been too long because most of the staff know me by my first name. But it’s also how things are organised that are never the same.

Good luck

Colette

[PaulaS Volunteer]

I'm pretty sure there are some folk in this group, who go to a hospital in Nottingham. One of the CLLSA day conferences was held there a few years ago, and was very well attended. (I went from Sheffield for the day).

If you changed the title of your post to something like "Is anyone seeing a specialist in Nottingham?", then it would catch the attention of the Nottingham folk!

Paula

[GRMat158 in reply to PaulaS]

Thanks Paula

[Oleboyredw-uk]

There is a zoom meeting of the CLL Nottingham virtual support group run by LeukaemiaCare soon. I think 22nd June. If I were you I'd jump on that, introduce yourself and see what people have to say. If it's anything like the Manchester one very informal and friendly.

Best, rob

[GRMat158 in reply to Oleboyredw-uk]

Excellent idea - thanks Rob

[Shefflass]

Hi. I have been a CLL patient at Nottingham City hospital for 15 years. I think the haemotology unit there is truly wonderful and cannot praise them enough. They are one of the best centres in the country. They havetheir own building with a dedicated clinic area, day case unit and wards including for stem cell transplants. They participate in clinical trials and I understand are currently being assessed to enable them to do CAR-T. I've had several different treatments over the years, currently swapping to Venetoclax. I'm so relieved that I get to be at this unit for my care. There are several CLL consultants and specialist nurses. All are friendly, professional and, in my opinion, at the top of their game. As you can see, I'm a big fan! So please don't worry if you have to change to go there. You will be very well cared for. Gillian

[GRMat158 in reply to Shefflass]

Thanks Gillian - that is good to know - it sounds very similar to where I am currently treated at Bournemouth. The fact that they participate in trials is the main reason that is where I am hoping to transfer to. They - like Bournemouth - are part of the Alpine study that I am on at the moment and as it is working well for me just now I am keen to continue!

George

[Shefflass in reply to GRMat158]

I'm guessing your current consultant will liaise with them. The guest speaker at the Leukaemia Care zoom meeting on 22nd June is one of their CLL Clinical Specialist Nurses. She is not only very knowledgeable but also friendly and approachable. I don't know how I'd manage without her! Gillian