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“The patients are so grateful for our help”

“I have a bittersweet relationship with my job because of the sadness I deal with on a daily basis, but knowing that I am making a difference in someone’s life during difficult times makes my job worthwhile.

My name is Selam and I’m a clinical nurse specialist at The National Prion Clinic (NPC). Here at the NPC we deal with the diagnosis and management of patients with Creutzfeldt-Jakob disease (CJD, prion disease).

CJD can be grouped into three categories: inherited, acquired, and sporadic; it is a rapidly progressive neurodegenerative condition which it is fatal and the affected individuals experience deterioration in cognitive function, memory, motor skills and also speech and language difficulties.

We see people from all over the UK as we are a national centre for referral, last year alone we saw 208 patients. Sometimes we get calls from people all over the world, asking for advice. CJD is a complex disease to diagnose, ruling out other neurodegenerative issues initially is imperative as treatments could potentially be available and CJD is usually low on the list of diagnoses.

I spend most of my working day on the phone or emailing various health professionals across the country. Then when I see patients in clinic I am assessing their physical, social and psychological needs as a basis for organising a care plan. I also give information, advice and support to patients, families and other health care professionals on prion disease.

I do find it hard to leave my job at work, but I think that is what makes me good at what I do – helping my patients is the most important thing. The best part of my job is forming these close relationships with families and speaking to them each week to advise them about the disease progression and helping organise the social services and multi-disciplinary teams. Our patients are so thankful for the help we offer and we often get lovely messages from them. Recently one patient wrote to us saying, ‘You have brought me from a very dark place suffocating at the bottom of the sea, unable to breathe. You taught me to swim and breathe. Thank you seems a feeble few words of expression. I hope after all I have been through with your support that you will know how special you are.’ That kind of feedback makes our day!”

Selam Tesfamichael, Clinical Nurse Specialist, The National Prion Clinic

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