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Robert Johnstone

UNITED KINGDOM

ROBERT JOHNSTONE FROM THE UK HAS BEEN AFFECTED BY CHRONIC RHEUMATOID ARTHRITIS THROUGHOUT HIS LIFE

“In my capacity as Chief Executive of the UK Sickle Cell Society, we try our best to raise awareness about SCD. SCD is not an orphan condition; it is a group of disorders that affects haemoglobin, the molecule in red blood cells that delivers oxygen to cells throughout the body. SCD affects millions of people worldwide. Its impact is felt by the patient, carers, the family and beyond. Aside from the many health challenges facing patients, there are also issues related to the impact on education of children, because SCD care often lacks continuity.

As a small organisation I think we punch well above our weight. With minimal funding, we generate greater awareness of the disease and advocate on behalf of patients. We have a lot to do: sickle cell disease is the most common genetic blood condition in the UK and it is growing.

We need the MedTech industry to keep developing and maintain their innovation streak to ensure life for SCD patients gets consistently better. Donating blood is very important and blood transfusion therapy is a hugely important treatment regime for sickle cell disease. Innovation in MedTech has meant automated transfusion is now possible, and both patients and carers alike deem automated transfusion to be a far better experience. Although it’s not for everyone, this newer technology is faster and can help lower the level of potential iron overload for patients. MedTech also plays a significant role in bone marrow transplantation, which is important for SCD patients.

As the UK Sickle Cell Society, our job is to work with MedTech, the NHS, patients, families and carers, to make all of this happen.”

“I guess I’m an expert on patient issues by experience. I’ve had a chronic condition for nearly 60 years and would consider myself a self-managing patient rather than a passive recipient of care, actively trying to control my condition. I feel more empowered, happier and healthier when I’m in control of my health and I’m managing my condition. Some patients are looking for that magic bullet, going to their doctor to get medicine, get treated and trying to get on with their life. But for me and other patients with multiple chronic diseases, actively monitoring my health is crucial.

I have a few devices on hand when I need them. When I’m at home, I wear an alarm alert device around my neck. This is just a precaution should there be a problem and my wife is not around to help. I have a stair lift fitted in We need the MedTech industry to keep developing and maintain their innovation streak to ensure life for SCD patients gets consistently better. Donating blood is very important and blood transfusion therapy is a hugely important treatment regime for sickle cell disease. Innovation in MedTech has meant automated transfusion is now possible, and both patients and carers alike deem automated transfusion to be a far better experience. Although it’s not for everyone, this newer technology is faster and can help lower the level of potential iron overload for patients. MedTech also plays a significant role in bone marrow transplantation, which is important for SCD patients. As the UK Sickle Cell Society, our job is to work with MedTech, the NHS, patients, families and carers, to make all of this happen.” my home to help me get upstairs and I use a powered wheelchair which is essential for my condition. As a patient advocate and board member of IAPO – the International Alliance of Patients’ Organisations, representing the UK patient association, National Voices – I travel regularly, particularly to Brussels and, in this case, I use a standard wheelchair.

Patient empowerment and encouraging patients to take control of their health and even becoming advocates in their own right, is vital. There have been great strides made in the UK in empowering patients, and advocacy amongst patient groups is encouraged both by the Department of Health and the NHS. However, there is still room for improvement both from the government and the MedTech industry too. For instance, the medical technology industry is on the cusp of discovering even more in mHealth and eHealth. I think that to do this successfully, companies should reach out to patients and users to identify what the needs are. Patients and consumers can help to design these products reflecting user needs and this can create a mainstream market for such health-related devices. This would empower patients and benefit the industry at the same time.”