“ Lost to follow up ”

Thames cancer registry data estimate childhood cancer survivors in Sussex region 200 patients known to RACH Around 120 known to be receiving FU services ‘Lost to follow up’ a major Quality issue Baseline testing included notes audit of 30 patients not receiving LTFU Background

Case Study 36 year old man Referred to adult endocrine service following a work place medical “TATT” PMH included ALL aged 2, had received both cranial and testicular irradiation Given the “all clear” at 14 Testosterone from No adult follow up

‘Presenting Complaint’ ‘I have been tired the whole of my life I have been to GP’s about it and work medicals but it has never been pursued. I look really young and I mentioned this to the work doctor as well as about the tiredness.’

Investigations DEXA scan - Osteopaenia GHRH-arginine test - Growth Hormone Deficiency –IGF-I 12.7 nmol/l (13 – 50) –Peak GH 6  cg/L

DEXA SCANS After 18 months testosterone treatment

His Story “It did mean that what little energy I had was focussed on work. It’s meant that in order to get an education all my energy was used up and I didn’t go out. I now think that I have been passed over as far as promotions are concerned because I look so young no one takes me seriously. I now know that this is as a result of hormone deficiency. I think that I have probably been depressed on and off for years. The tiredness affects relationships. Even at university what little energy was spent trying to get through the work. There was no energy to spend socialising and eventually people stop asking you. It’s the same at work. You can work and then when people go out you haven’t got the energy and then they stop asking.”

His Story “All the GPs and other medicals that I have had at work, none of them put together the fact that I had cancer as a child and the symptoms that I now have. The tiredness and looking really young. I suppose most people just don’t know about these things. The numbers are still quite small so I don’t know how many people like me a GP would get to see.”

BUT … “When we got the final all clear it was such a relief to know that we wouldn’t have to attend the Alex again. My mum is a nurse and she felt same. It was years and years of a heavy weight and anxiety. Probably more for my mother than for me. She had had me in hospital and bringing in my siblings to see me and taking us all to outpatient appointments with us all in tow. It must have been quite a stress. For me I just had the burden of attending and the anxiety that it provokes. It’s also boring hanging around waiting to be seen. I missed a lot of school.” At the time do you think that you would have been receptive to coming longer term and attending a late effects clinic? “I don’t think that I would have been receptive. The argument for coming back long term would have had to have been really strongly argued. Even my mum would have found that difficult. We were just so relieved to say goodbye to the whole thing and put it behind us.”

Conclusion Health needs of ‘lost of follow up’ patients not met Patient experience has been a very valuable tool to aid local service development The majority of our patients ‘lost to follow up’ were not patient DNA but due to poor process and lack of service provision Feedback form patient surveys strongly suggests importance of strong relationship at time of transition