Deborah Hull

My current role as a member of a highly specialist team ,to manage a group of patients who suffer with a rare auto inflammatory condition.

Following referral, we provide genetic testing in order to reach a confirmed diagnosis of the condition. Once a condition has been diagnosed, the medical team will decide on a therapeutic course of treatment which our nursing team will organise in partnership with the patient. In this way, a relevant ,holistic care pathway for treatment is instigated. according to our clinical and nursing protocols and patient need's, ensuring patient safety at all times

• Patient care: We provide specialist, direct treatment depending on genetic diagnosis. Relevant advice and information is combined with emotional and physical support according to patient needs.
• Information and advice: Help patients understand their diagnosis and treatment options, and answer any questions they may have. Provide relevant literature.
• Care coordination: Organise relevant appointments and follow up in care to include blood test monitoring. Ensure patient has contact information and we are able to respond to queries in a timely manner.
• Complete annual health care questionnaire with patient in order to audit patient satisfaction with care / service
• Work with other professionals to coordinate care through a home treatment service once the patient is established on a safe treatment regime.
• Multidisciplinary team meetings: Present any problems we might have in relation to patient care to senior medical staff at regular team meetings, in order to ensure personalised care plan is in place to enhance and optimise care and ensure patient safety
• Education: Educate patients and new nurses on clinical issues and best practices
• Understand specialist medications, side effects, mode of action and response to treatment. Possess the relevant knowledge to know how to respond to patient request for information relating to their condition.
• Keep abreast of new research and information in relation to this specialist area.
• Research: As a national research centre, there is much research being carried out and it is beneficial to keep up to date with current issues. This information can also be relayed during MDT meetings.

I became involved in an NHS Improvement project funded by the Royal Free Hospital Charity. This role was created as part of a drive to reduce delays when people were being discharged from hospital back to a care home. The underlying principle of the approach was to promote safe and timely discharges home.

My role was to ensure a relevant discharge plan was in place which met the patients needs and also the legal requirements for providers.

The role improved my general assessment skills and I gained valuable knowledge in relation to conditions such as dementia and end of life care needs.

Tupeed from Ealing Hospital Trust to Royal Free Hospital trust when latter hospital trust won a bid for the service.

Management of a caseload of up to 50 patients. Holistic nurse assessment following referral from hospital teams, GP's, managed in collaboration with multidisciplinary team (MDT) according to NICE guidelines. Complex patients presented at MDT meetings with Cardiology and Palliative care Consultants and other visiting medical teams, to discuss and agree an appropriate plan of care. The overarching principle being to avoid hospital admission.

Ability to work autonomously but also realise the importance of working collaboratively so that the patient received the best care according to up to date evidence and recognised protocols

Excellent organisational and record keeping skills needed. Clinically appropriate care was provided through nurse led clinics for those patients able to attend, or home visit appointments for house bound patients.

Advanced skills required in communication, and counselling experience a definite bonus in relation to managing complex conversations around palliative care and end of life situations. Clinical and nursing assessment an important aspect of the role as medication titration advice given according to symptoms. Patients and carers taught coping mechanisms and how to manage condition and to recognise the importance of early problem reporting.

Junior medical staff and nurse students were regularly allocated to our clinic sessions to learn more about heart failure management in the community. We chaired a regular "Expert patient group"

Important to maintain up to date specialist knowledge in relation to heart failure and related conditions and also know how to signpost to relevant social services as in this condition, it is equally important to 'care for the carer'.

We were involved in local and national audit. The patients we presented at heart failure forums were entered onto the National Heart failure Audit.

I worked as a critical care nurse on an acute medical ward / coronary care unit. I was a sister in post for my last couple of years before I left to pursue my career as a heart failure nurse.

Skills involved included excellent knowledge in relation to acute medical and cardiac conditions, exemplary organisational and management skills, advanced communication skills.

Essential to attend regular relevant learning and nursing updates via recognised professional bodies, in order to maintain an excellent level of specialist knowledge to ensure patient safety at all times.

As a newly qualified general nurse, I felt it was important to gain experience within different specialities. I spent an average of three years in each post, including general surgery largely related to a cancer diagnosis (bowel, great, urology) I became proficient in wound care and considered specialising as a wound care nurse at this time.

It was during this period of time that I also attended an evening class at Harrow College and obtained a counselling diploma, largely because I found that working with women, some of whom were my age, dying of cancer, was quite a traumatic experience. I found that this course helped me to facilitate my own coping mechanisms, which also benefited my patients.

As a Urology nurse, I assisted in setting up a pre-assessment clinic for men with prostate problems, this was largely nurse led.

Other posts included:

Accident and Emergency. Much valuable experience gained here around how to cope in a highly pressured environment, learning the importance of good stress management practices and self care. How to respond in an acute emergency situation, and the importance of good triage.

Ear Nose and Throat cancer surgery, to include tracheostomy care.

In between permanent posts I took breaks in order to attend to family commitments and during these times I worked as an agency nurse in some interesting posts. These included Marie Curie, Mount Vernon specialist burns unit, the transplant ward at Harefield hospital and Denville Hall home for actors where I met some of my favourite old time actors including Peggy Mount and Pat Coombes and Richard Attenborough who was patron at the time.