New UK Late Effects Service

[Sarah_PRDA]

Hello everyone,

I wanted to share the details of the new Macmillan Radiotherapy Late Effects Service, run by Oxford University Hospitals. The services is accessible to people in Oxfordshire, Wiltshire, Buckinghamshire and Milton Keynes and also accepts self-referrals which is great news.

Further details can be found on the PRDA website along with the details of other UK late effects services: prda.org.uk/late-effects-cl...

Have a good weekend everyone

Best wishes

Sarah

[Philfruitbat]

Well done to Oxfordshire. I live in Surrey, and have been trying for an appointment anywhere in the south of England without success.

[Sarah_PRDA Partner in reply to Philfruitbat]

Sorry to hear you've been finding it difficult to find specialist support. Have you had a look at the list of UK Late Effects Services we compiled?

👉prda.org.uk/late-effects-se...

If there is nothing near you, some services will take referrals 'out-of-area'. If there are any you can travel to please feel free to get in touch and we can hopefully give you some more information: prda.org.uk/get-in-touch/

[Philfruitbat in reply to Sarah_PRDA]

My oncologist wrote to the nearest site to Mr, and got a reply that they did not accept patients from out of area. I am retired, therefore would be willing to travel to any site that would be willing to see me. I am currently groping in the dark trying to find things that help my condition.

[Gingerurgent]

Congratulaions!

North east next, maybe ?

[Springsteen666 in reply to Gingerurgent]

If you are anywhere near Durham, Mcmillan have a steering group currently to try and influence the creation of a late effects service in the north east. Monthly meetings are at the Queen Elizabeth in Gateshead. Gathering steam at the minute. I am attending a conference at Ramside Hall on 14th Feb. If you want anymore info just shout ,

Julie

[Sarah_PRDA Partner in reply to Springsteen666]

Thanks for sharing this Springsteen666 . There was a call last July for a focus group, which we shared on our News updates: prda.org.uk/northern-radiot...

There are contact details in the link if anyone wanted to enquire about the steering group.

[Quercus16]

i think it would help if the Macmillan booklet included Insufficiency fractures in their list of possible affects of pelvic radiotherapy. The one i recieved 2 years ago never mentioned it! It was also really difficult to find any information about it. Might have changed by now but I remember being shocked it didn't appear in their information. I struggled to find any current information and help.

Good to see more services coming on board. Next a coming together, unification of all these services as one throughout the UK and globally so all the information is shared. I firmly believe the larger this joint organisation can get will increase the information available and perhaps encourage the clinicians to look at ways to manage these difficulties that we suffer. Too many have never even heard of insufficiency fractures let alone how to deal/manage/improve the quality of life of those who suffer from them. ‘Sorry we only deal with healthy bones’ is a quote from a clinician I visited for help. I left in tears!

Education is key….

Plus a unification of services sharing information.

Thank you

[Sarah_PRDA Partner in reply to Quercus16]

Absolutely agree that the way forward is to have a comprehensive, network of radiotherapy late effects services that are accessible to all.

Sorry to hear you've had such an upsetting experience. If you are struggling to get support or need help finding a Late Effects Service near you, you are more than welcome to get in touch and we will do what we can to help prda.org.uk/get-in-touch/

You can find a list of UK Late Effects Service on our website: prda.org.uk/late-effects-se...

[Belfastgirl1975]

any such clinics in Northern Ireland at all?