Pip Large explains more about her time as a nurse and why she thinks our new 'Step-By-Step Guide For Patients' is so important for patients and healthcare professionals.

Can you tell us about your role as a Sarcoma Clinical Nurse Specialist?

During my now quite long nursing career (I will celebrate 50 years next year) I have been involved in a variety of specialist roles – a bit of a jack of all trades I believe! But in all this time I have done little with cancer care, and so as an orthopaedic trained nurse I was enthusiastic to take the opportunity to combine orthopaedics and cancer, joining the Oxford Sarcoma service as a Clinical Nurse Specialist (CNS) in 2010, Oxford being one of the 5 bone sarcoma centres in England.

In nursing you rarely get two days the same. At Oxford the CNS role starts its working week generally attending the Monday MTD meeting, for me this meant fighting the Oxford morning traffic to get in for the 8.30 meeting. The outcomes from this meeting generally dictate the working week, with meetings invariably lengthy and at times quite gruelling as you are discussing complex and distressing cases. Almost always the meetings would over run so getting to the main OP clinic of the week, which followed on, resulted in a late running clinic.

The responsibilities of the CNS role, as I saw it, were acting as advocate, both to the patients and to their families. Having a cancer diagnosis, coping with the symptoms, diagnostic processes and treatment, which can be long and unpleasant, and leaves many feeling vulnerable and confused, frightened and distressed. The work undertaken by the CNS role and the support and direction offered can go some way to alleviating some of these. Becoming a ‘family friend’, a link between all the services and trying to join these up allows for a ‘smoother’ pathway and less stressful experience.

I supported patients all the way through their journey. I could be visiting them when they were undergoing surgery and when they were having their chemotherapy.

The start of Pip's nursing career at the Royal National Orthopaedic Hospital Stanmore in 1969.

Why did you decided to become a Trustee at the Bone Cancer Research Trust?

I joined BCRT towards the end of a 3 year period, working as a Clinical Research Nurse for Oxford University. The role followed on from my time working as a Sarcoma CNS. The experience and knowledge gained from working with the Sarcoma MDT was instrumental in the success of a bio banking tissue sample collection I orchestrated. When I received an email from BCRT looking for new trustees I decided to get involved. My reasoning for this new venture was an intrigue to know and understand how research is undertaken and managed by the charity.

What does your role as a Trustee involve?

My main role as a trustee is working with and supporting the Head of Research and Information and the team. I have been involved in the birth of the infrastructure grants which have been set up to facilitate tissue sample collections for primary bone cancer patients. I have also gained a far greater understanding in the research grant process, research applications and working with the research communities. It has allowed me to continue my interest and professional relationships in sarcoma, especially in bone sarcoma, since retiring from Oxford. I am also a core member of the Management & Finance committee that supports the office team in delivering BCRT’s mission.

From your experience as a Sarcoma Clinical Nurse Specialist, why do you think the guide is so important?

The Step-By-Step Guide For Patients is fab. At Oxford we had talked about the need for a patient information pack so I know how useful and needed this guide is. I hope that every patient newly diagnosed will be offered a guide and be helped and encouraged to use it to best advantage. It is a discretionary use but I do hope that patients will find it useful, practical, supportive and ultimately invaluable while going through treatment, and then after when life gets back to some normality, acting as a memoranda of a unique life experience.

How do you think healthcare professionals will find the guide useful in supporting patients through their diagnosis, treatment and recovery?

For professionals, the pack will be a tool to support and inform patients and families when discussing and coping with difficult topics and situations. It has the potential to be a communication tool between professional and the patient by being a written record that can inform staff of the a wealth of information around diagnosis, treatments or problems that have occurred both in the treatment centre but also at other hospitals or treatment centres. It can reinforce and support the information given by staff, often difficult for patients to retain during a consultation. It allows staff to ensure contact information is available and recorded along with specific information around drug usage etc.

Is there a message you would like to send to our supporters?

From a retired clinical specialist and research nurse the ‘Patient Guide’, which has been long overdue, is going to be a huge ‘helping hand’, to both patients and families, providing all the information needed to guide and support those trying to cope and ‘get through’ a bone sarcoma diagnosis.

I would like to send a big thank you to all the BCRT supporters, your support has allowed this guide to become a reality.

For more information about the 'Step-By-Step Guide For Patients' and to order a copy click here.