Patient stories: 2021

This is the story of Issy McGowan and her experience with the START (Support Transition and Recovery Team).

The service user was assisted in providing the story by Rachael Pankhurst, Patient Experience Facilitator.

This is Kate’s story about her journey, her experience and time with the Children & Young People's Chronic Fatigue/ME Service (CYP CF/ME)  – Dorset County Hospital.  Kate wished to tell her story and wanted to highlight and give hope for other young people, like herself, diagnosed with CFS (Chronic Fatigue Syndrome). 

Kate had all but lost hope when her thyroid surgery did not work.  However, she was given renewed hope and could again envisage her future thanks to the service.  The care she received was high quality, personalised treatment.  The care and support she and her family received led to an emotional discharge from their care and to living her best life.

Kate’s story

In October 2017 I fell ill with an over-active thyroid, I was in year 11 at school and unfortunately missed the whole year. I had my thyroid removed in May 2018.  I was told I would feel better almost instantly, but soon after my surgery I was still feeling ill. As a family we explored different scenarios as to why I was still unwell and underwent an MRI of my brain.

Eventually I was referred by my GP in September 2019 and come to know about the CYP CF/ME at Dorset County Hospital.

I was seen in November 2019 where I was officially diagnosed with Chronic Fatigue Syndrome.

My first experience in the CYP CF/ME clinic was excellent. I met Dr Newman and Emma Haynes and they were both so welcoming and friendly, they made me feel very at ease and welcomed. My appointment lasted an hour, and I did not feel rushed whilst there. After my first appointment I was then solely under Emma’s care and I felt very comfortable with this. I felt the whole experience was very positive and well organised. Although it took two months to be seen in clinic, this did not matter as I was on medication and still under my doctor’s care.

Throughout my whole experience with the Children’s Therapy Department, I did not encounter any major difficulties. There were a couple of times we called my doctor’s secretary, she was very difficult to get hold of, this is the only issue I had. I had no troubles with CYP CF/ME clinic.

Throughout the course of my personalised treatment Emma was very open and honest, she gave me and my parents information on CFS and was always there to help and answer any questions we had. When Emma gave me information, or things to do, she would always make sure I was comfortable and happy with her approach.

I had a huge amount of trust in the staff involved in my care.  Every single person I had contact with was friendly and did all they could do to help. Every member of staff I met was kind and caring. Emma made me feel cared for and important and I wouldn’t have changed the experience for the world. Emma made me feel safe in the clinic and gave me hope that one day I would be better. During my treatment, I felt safe 100% of the time. Emma would always be there for me on the phone, via email, or in the clinic.  When Covid-19 happened we would talk face to face virtually.

Everything the staff did for me was excellent. Every member of staff from the doctors in the Children’s Therapy Department to the Children & Young People's Chronic Fatigue/ME Service was amazing, I felt very cared for and looked after.

Being ill was the hardest time of my life including my family’s life. We are an active family but the impact of my CFS affected everyone, the journey has been hard and an emotional one for us all, but I will always remember the care and treatment I received from the CYP CF/ME because it was wonderful. I have formed an extremely special bond with Emma in the team and going through the journey of discharging me was emotional for everyone. 

I haven’t a bad word to say about the service, however, I do have an observation. My in-clinic appointments with Emma were all in the Children’s Therapy Department in Dorchester. Being 17, I was always the eldest in the waiting room, I did not mind this, but it was a bit strange having me and my father in the waiting room along with toddlers. I don’t know if it would be possible to create a waiting room for teenagers/ older children as some people may feel embarrassed being in the child's waiting room.

Feedback from Emma Haynes,

Children and Young People’s Chronic Fatigue Service Lead, Dorset HealthCare

It was an absolute pleasure working with Kate and her family and I’m so pleased that despite the challenges she was facing, she feels that she had such a positive experience. We are a small team and are very passionate about supporting children and young people with CFS/ME. We have seen many young people make excellent progress and we are really motivated to support others on this journey.

From Kate’s story, you get a sense of the challenge that this diagnosis can present to young people and the resilience that they need to develop in order to make the changes that will enable them feel more confident about their health. It’s a real privilege to work alongside them as they take these steps and it’s rewarding when you know that they have developed the self-awareness and skills that they need to carry on independently, getting on with doing the things that they love.

I’d like to thank Kate for taking the time to share her story. I appreciate that it can be difficult to look back to those days when things were so tough but I’m confident that her experience can provide inspiration and hope to others in similar situations.

In terms of the waiting area in the Children’s Therapy Department, at DCH, the CYP CFS/ME service shares the space with all the other clinic users. Kate is quite right in that there can often be quite an age range. As she mentioned, that may be embarrassing for some and I’m mindful that others may find it frustrating as the little ones can sometimes get quite lively.  I’m not sure what we can do as space is quite limited.  Equally, since Covid-19, practically all of the C&YP CFS/ME appointments have been carried out using Attend Anywhere, so it may be that shared waiting areas for some clients is a thing of the past.

Children & Young People's Chronic Fatigue/ME Service - Feedback

Department/Ward/Unit: Children & Young People's Chronic Fatigue/ME Service

Triangulation data: 30/04/2020 - 30/04/2021

March 2021 Covid-19:  Health Visiting Poole