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Carers Rights Day. Diane’s Story

23 March 2021

Carers Rights Day. Diane's Story

Always Remember Parents are Carers

Today is Carers Rights Day, check out Diane's story and her experiences caring for her daughter Ella who has NF1. Some of you might even qualify as carers and not know about the rights you have as a carer. Nerve Tumours UK supports Carers UK, as well as Diane and all other carers supporting someone affected by nerve tumours. 

“My daughter Ella has a spontaneous form of NF - no family history, so sheer bad luck – and even though she displayed many of the characteristics of NF, health professionals including a geneticist failed to diagnose her. Ella was born with another genetic condition called Exomphalos Major (liver and bowel developed on the outside of her body), so her poor health and development was blamed incorrectly on this.

In desperation I went to my GP for support, who just said “What’s Neurofibromatosis?”. During our consultation she had to look it up on the internet. I was later told that student doctors are told to not worry about Neurofibromatosis too much, as they’ll probably never come across it. This is worrying as with this mind set, they’ll never think to look for it.

Now 7 years on, our lives revolve around constant hospital visits. We currently are cared for by 3 different NHS Trusts which involves costly travel and parking. Birmingham Children’s Hospital is amazing but sitting in oncology with Ella is distressing and upsetting for both of us. Her NF has progressed and has now left her with scoliosis, pronation in both feet, hypermobility, and fibromas appearing on her torso.

As a mother, my primary goal has always been to do all the worrying and allow Ella to just be a child and try and enjoy life as much as her condition allows. To enable this to happen, my life has changed beyond recognition. I had a career that I had worked hard to achieve and progress in, but this came to an end in 2010. It just became too hard to do hospital appointments, keep enough annual leave to look after both my children during school holidays and hold my job down. When my line manager asked, “what days can we expect to see you this week?” I knew I’d have to give my job up. Employers try to be flexible when it comes to working parents, but that flexibility becomes more rigid when faced with an employee with a child who has an incurable condition. I think you’re then looked on as a bit of a liability.

I adore my daughter and would do anything within my power to make life better for her.

However, I do feel I’ve changed as a person since her birth. I’m definitely not as confident as I once was when I was in work. Don’t get me wrong I’d give my life for my child, but leaving work has impacted on me, and some weeks the only people I physically talk with are my husband and daughter.

As many carers will understand every day is a battle whether it’s getting the right treatment, or support at school, it constantly wears you down. I don’t like having to be ‘that Mum’, who is constantly on the telephone complaining that certain interventions have not been adhered to. I picture in my mind the person on the other end of the telephone mouthing ‘it’s her again.’ I don’t want to be ‘her’ anymore.

Giving up work was the best thing care-wise, but the financial impact has been immense, after all most people require 2 incomes to keep a family going. I do claim Carers Allowance which is £66.15 a week, but that’s £9.45 a day! I don’t want paying for looking after my daughter, but I do need to pay national insurance contributions to enable me to get a pension. At the end of the day carers must save the Government billions, imagine if every carer said ‘I’m done!’ Well it wouldn’t happen and the Government know that all too well.”

Diane is right – the care provided by the nations’ unpaid carers is worth an estimated £132bn per year – considerably more than total spending on the NHS in England. New research has estimated that there are as many as 8.8 million carers across the UK, and many don’t realise they are entitled to support. Carers Rights Day is held every November to help them find out about their rights. Find out more by clicking on the button below.

" I do claim Carers Allowance which is £66.15 a week, but that’s £9.45 a day!... At the end of the day carers must save the Government billions"

– Diane

Masterclasses in NF: Constitutional Mismatch Repair Deficiency Syndrome as Differential Diagnosis to NF1/Legius Syndrome - Prof. Dr. Katharina Wimmer

Constitutional Mismatch Repair Deficiency Syndrome as Differential Diagnosis to NF1/Legius Syndrome

Prof. Dr. Katharina Wimmer, Medical University of Innsbruck

Masterclasses in NF: Rare NF1-Associated Tumors in Adults - Eric Legius & Prof. Ellen Denayer

Masterclasses in NF: Rare NF1-Associated Tumors in Adults

Eric Legius, MD, PhD, University Hospital Leuven

Prof. Ellen Denayer, University Hospital Leuven

Masterclasses in NF: Optimising Hearing Outcomes in NF2-Related Schwannomatosis - Simon Freeman

Masterclasses in NF: Optimising Hearing Outcomes in NF2-Related Schwannomatosis

Simon Freeman, MPhil FRCS, Manchester Royal Infirmary and Salford Royal Hospital

Masterclasses in NF: NF1 Dermatological Manifestations - Pierre Wolkenstein, Laura Fertitta & Sirkku Peltonen

Masterclasses in NF: NF1 Dermatological Manifestations

Pierre Wolkenstein, MD, PhD, Hopital Henri-Mondor, Paris, France

Laura Fertitta, MD, Hôpital Universitaire Henri Mondor

Sirkku Peltonen, MD, PhD, University of Gothenberg, Sweden

Masterclasses in NF: Breast Cancer in NF1 - Gareth Evans

Masterclasses in NF: Breast Cancer in NF1

Gareth Evans, MD, University of Manchester, UK

Masterclasses in NF: Pain in Non-NF2-Related Schwannomatosis - David Pang

Masterclasses in NF: Pain in Non-NF2-Related Schwannomatosis

David Pang, MD, ChB. Guys and St Thomas' Hospital NHS Trust, London

Masterclasses in NF: Distinguishing Non-NF2-Related from NF2-Related Schwannomatosis - Clinical and Genetic Approaches - Said Farschtschi

Masterclasses in NF: Distinguishing Non-NF2-Related from NF2-Related Schwannomatosis - Clinical and Genetic Approaches

Said Farschtschi, MD, University Medical Center, Hamburg-Eppendorf, Germany

Masterclasses in NF: NF1 Pre-Implantation Genetic Diagnosis - Eric Legius & Prof. Ellen Denayer

Masterclasses in NF: NF1 Pre-Implantation Genetic Diagnosis

Eric Legius, MD, PHD, University Hospital of Leuven, Belgium

Prof. Ellen Denayer, University Hospital of Leuven, Belgium

NF2 Working Together: from a tentative diagnosis and beyond

Understanding the impact that a tentative diagnosis has on a parent. Information and access to the existing NTUK and Specialist Nerve Tumours medical and non medical care network.

NF1 Working Together Part 2: from a tentative diagnosis and beyond

Understanding the impact that a tentative diagnosis has on a parent. Information and access to the existing NTUK and Specialist Nerve Tumours medical and non medical care network.

NF1 Working Together Part 1: from a tentative diagnosis and beyond

Understanding  the impact that a tentative diagnosis has on a parent. Information and access to the existing NTUK and Specialist Nerve Tumours medical and non medical care network.

Masterclasses in NF: Surgery in NF2 - Michel Kalamarides & Andrew King

Masterclasses in NF: Surgery in NF2

Michel Kalamarides, MD, PhD, Hôpital Pitié-Salpêtrière, Paris, France

Prof Andrew King, MBBS FRCS FRCS(SN), Salford Royal Hospital, Manchester, United Kingdom. Member of the MAB of Nerve Tumours UK

Masterclasses in NF: Cognition and Behaviour in NF1: Phenotype and Treatment Approaches - Shruti Garg, Andre Rietman

Masterclasses in NF: Cognition and Behaviour in NF1: Phenotype and Treatment Approaches

Dr Shruti Garg, MBBS, MRCPsych, MMedSci, PhD, Royal Manchester Children’s Hospital, United Kingdom. Member of the MAB of Nerve Tumours UK

Andre Rietman, PhD, Erasmus University Medical Center, Rotterdam, Netherlands

Masterclasses in NF: Emotional Challenges in NF1, NF2 and Schwannomatosis - Susie Henley, Thomas Pletschko & Verena Rosenmayr

Masterclasses in NF: Emotional Challenges in NF1, NF2 and Schwannomatosis

Susie Henley, DClinPsy, PhD, Guy’s and St Thomas’ NHS Foundation Trust, London UK

Thomas Pletschko, PhD, Medical University of Vienna, Austria

Verena Rosenmayr, Clinical Psychologist, Medical University of Vienna, Austria

Masterclasses in NF: NF1 Pediatric Management - Rianne Oostenbrink

Masterclasses in NF: NF1 Pediatric Management

Rianne Oostenbrink, MD, PhD, Erasmus University Medical Center, Rotterdam, Netherlands

Masterclasses in NF: Associated Glioma in Children - the Optic Pathway and Beyond - Amedeo Azizi

Masterclasses in NF: Associated Glioma in Children - the Optic Pathway and Beyond

Amedeo Azizi, MD, PhD, Head of the Paediatric Neurofibromatosis Program and Paediatric Neuro-Oncology Program, Medical University of Vienna, Austria

Masterclasses in NF: NF1 Orthopedic Manifestations - Eric Legius and Christophe Glorion

Masterclasses in NF: NF1 Orthopedic Manifestations

Eric Legius, MD, PhD. Head of Clinical Genetics Department of the University Hospital Leuven, Belgium

Christophe Glorion, MD, PhD, Department of Paediatric Orthopedic and Traumatologic Surgery, Hopital Necker-Enfants Malades, Paris, France. 

Masterclasses in NF: NF1 Malignant Peripheral Nerve Sheath Tumours - Rosalie Ferner and Viktor-Felix Mautner

Masterclasses in NF: NF1 Malignant Peripheral Nerve Sheath Tumours

Prof Rosalie Ferner, Consultant Neurologist and Lead Clinician for Neurofibromatosis, Guy's and St. Thomas' NHS Foundation Trust, London. Member of the MAB of Nerve Tumours UK and Trustee of Nerve Tumours UK

Viktor-Felix Mautner, MD, PhD. University Medical Centre in Hamburg-Eppendorf, Germany. Head of NF Outpatient Department

Masterclasses in NF - Neurofibromatosis Type 1: Cutaneous Neurofibromas - Pierre Wolkenstein and Sirkku Peltonen

Masterclasses in NF - Neurofibromatosis Type 1: Cutaneous Neurofibromas

Pierre Wolkenstein, MD, PhD. Hopital Henri-Mondor, Paris, France. Head of the Department of Dermatology

Sirkku Peltonen MD, PhD. University of Gothenberg, Sweden. Professor of Dermatology

INFER (International NF Educational Resources) is a series of online educational lectures for medical professionals by leading neurofibromatosis experts. The Masterclasses take place online approximately once a month, each on a different topic, and include real-time interaction between the expert presenter and the participants. The presentations are conducted in English, with real-time audio interpretation available in 6 additional languages: French, German, Italian, Portuguese, Russian, and Spanish. A recording of each INFER masterclass is then be made available online in each language for those who could not attend an event. INFER is an initiative of Children’s Tumor Foundation Europe, supported by an educational grant from AstraZeneca. https://ctfeurope.org/research/masterclasses-in-nf

BPNA Keynote Lecture - Prof Rosalie Ferner - Neurofibromatosis 1 in the 21st Century

‘Neurofibromatosis 1 in the 21st Century’

Keynote Lecture at the 48th British Paediatric Neurology Association Annual Scientific Meeting on 21st January 2022

Prof Rosalie Ferner, Consultant Neurologist and Lead Clinician for Neurofibromatosis, Guy's and St. Thomas' NHS Foundation Trust, London. Member of the MAB of Nerve Tumours UK and Trustee of Nerve Tumours UK