Rare Disease Day - A focus on our Rare Disease Services

Here at HealthNet, we have a highly experienced team who, over the last 30 years, have worked in partnership with renowned clinicians and global pharmaceutical companies to design and develop industry-leading Complex Therapy Programmes across a wide range of disease areas.

On this Rare Disease Day, we interviewed our Rare, Orphan & Complex Therapy Team, who ensure the safe delivery of rare & orphan services to patients across the UK and Northern Ireland.

How HealthNet Supports Rare Diseases

What is your role at HealthNet and what does it involve?

“I am the Commercial Account Manager for Rare, Orphan, and Complex Services at HealthNet Homecare.

My role involves working with internal and external customers on a day-to-day basis to ensure all programmes are delivered at the highest standard and to continuously develop each service to remain at the forefront of rare and complex patient care.”

How does HealthNet support rare diseases?

“The most important element of our rare disease services are the patients and their families. We are truly a patient centric company who want to ensure that patients receive the best quality of care and are always at the forefront of everything we do.

At HealthNet, we are fully aware of the difficult journey’s patients have had to go through, from diagnosis to starting on a treatment.

By treating each patient as an individual, we aim to ensure their experience of homecare is as seamless as possible, starting from their first contact with our team, to timely delivery of their medicine and an enhanced and caring nursing support.”

What do you enjoy most about your role?

“What I enjoy about my role is knowing that everything I do ensures the best quality of service for our patients.

This is from liaising with the NHS to ensure individual patients are looked after, dealing with pharmaceutical companies to ensure service provisions are correct and enhanced where required, and lastly working with the internal teams to ensure each step is done to the highest quality.”

A Pharmacist Role in Rare Diseases

What is your role at HealthNet and what does it involve?

“I am the Lead Pharmacist at HealthNet’s Featherstone site. This is where the Rare, Orphan & Complex Therapy Team is based.

As Lead Pharmacist, my role includes supporting my team. As Pharmacists, we are responsible for screening prescriptions for any clinical or legal issues, providing advice and answering queries where required to patients on medication and storage, along with educating patients and colleagues on new therapies.

We work closely in assisting the registering and management of patients as these patients often have complex requirements and ancillaries that require careful support.”

How do Pharmacists play a key role in supporting patients with rare diseases and how does it vary from non-complex related therapies?

Pharmacists provide personalised care to patients with rare diseases.

HealthNet works closely with patients and their families to understand their unique needs and we always aim to meet these needs.

Pharmacists can provide education about their medication and potential side effects and understanding their treatment plans. We work as a central point of contact whereby our teams coordinate with patients and other healthcare professionals to ensure the highest quality of care.

There are differences between patients with rare diseases and those with non-complex related therapies in that rare diseases often require complex multi-disciplinary treatment approaches and requiring high-cost medication.

Patients often have a lengthier diagnostic journey and for some rare diseases only a single medication exists to treat it, often on heightened pharmacovigilance monitoring requirements. Ensuring such documentation is in place before a patient begins treatment is part of a Pharmacists screening process.”

An Operations Perspective on Rare Diseases

What do you enjoy most about your role at HealthNet?

“My role as Rare, Orphan and Complex Therapies Assistant Manager involves providing support for the Rare, Orphan and Complex Teams so they are in the best position to carry out their role, implementing streamlined and effective processes to ensure the most efficient ways of working, and working closely with our patients and their providers, nursing and our clinical teams to ensure we provide the best possible service from HealthNet Homecare.”

What are some key challenges you face?

“Providing life-changing treatments also comes with complex and timely processes. These deliveries include many complex and high quantity items which need to be registered, dispensed, checked, packed, and delivered within a required time frame.

Some deliveries can even go throughout the night, depending on the urgency. This a very pressurised role for myself and the team but due to the nature of the treatments, we work closely together to ensure this is executed as quickly and effectively as possible.

What do you enjoy most about your role?

“I enjoy leading and being a part of the Rare, Orphan & Complex Therapy Team. We have an excellent team of highly knowledgeable staff who always have our patient’s best interest at heart.

The team understand the importance of their role and always ensure to provide the best possible service, building relationships with our patients and understanding their personal needs.

Being a part of the Rare, Orphan & Complex Therapy Team is a very fulfilling role and a team I am proud to be a part of.”

A Nurses Involvement in Rare Disease Patient Care

What is your role at HealthNet and what does it involve?

Clair – “My name is Clair, I am the Clinical Team Manager here at HealthNet.

Our Nursing Team collaborates with clinicians and pharmaceutical companies to provide comprehensive care tailored programmes and services, such as ongoing administration, by specially trained nurses.

Our goal is to ensure patients receive the best possible care and quality of life while managing their conditions.”

Katie – “I am the Paediatric Lead here at HealthNet. I manage the Nursing Team whilst supporting with the growth of paediatric services, including Rare, Orphan and Complex conditions.”

How do our nurses support patients with rare diseases?

Clair – “HealthNet nurses provide comprehensive and compassionate care. Our nurses play a crucial role in improving the well-being and quality of life for patients with rare diseases. Their dedication and expertise ensure that patients receive the best possible support and care in managing their conditions.”

Katie – “We care for children with rare and orphan conditions in their own homes. We use our skills as paediatric nurses to gain the child and families trust to gain IV access and administer their infusions either at home or in school. It’s a real privilege to care for children in their own environment, you see a completely different side to the patient and family.”

Why is homecare nursing important for patients living with rare diseases?

Clair – “Living with a Rare and Orphan disease can be challenging, and the nurses at HealthNet provide the utmost care to the patients via emotional and psychological support, helping patients and their families navigate the impact of the disease.

Patients with rare diseases have individualised needs. HealthNet nurses are trained to provide personalised care tailored to each patient’s condition and requirements and enables patients to receive treatment in the comfort of their own homes, reducing the stress of frequent hospital visits.

This plays a vital role in enhancing the patient’s overall wellbeing.”

Katie – “Homecare nursing is really important for children. The treatment that they receive is often life long and for them to be able to receive treatment in the community either at school or home means they have minimal disruption to their education, be in their own homes with family and friends while receiving their treatment.

It also supports the patients family, as they don’t have to make weekly or two weekly trips to the hospital for infusions, meaning they don’t have to find childcare for siblings or take additional time off work.”

What do you enjoy most about your role?

Clair – “Being a Clinical Team Manager brings many enjoyments.

Knowing that I contribute to improving the quality of life for patients with rare diseases is incredibly rewarding. It’s fulfilling to see the positive impact our team has on patients and their families.

Also, I work with a team of passionate and skilled nurses which I enjoy mentoring and supporting. It is rewarding to see them grow and develop and provide high standards of care to our patients.

I love the collaboration the role brings with healthcare professionals and pharmaceutical companies. Having this collaboration ensures we provide comprehensive and coordinated care.”

Katie – “I love building therapeutic relationships with the patient and family – caring for people in their own homes is a real honour.

Visiting children for their infusions at home means as children’s nurses we can use play to gain the children’s trust, caring for one patient at a time means that we give the child and family all of our attention during treatment.“

Thank You

By helping to raise greater awareness of the services available at HealthNet, we hope to create further accessible healthcare options for patients living with rare conditions.

To learn more about our Complex Therapy services, please visit https://www.healthnethomecare.co.uk/corporate-partners/services/rare-orphan-complex-therapy-services.