Huntington’s Disease was first written about by George Huntington, a practicing GP working in New England in 1872.
Huntington’s is a genetic disease with people carrying the gene having a 50% chance of passing it onto their children. A brief review of the number of patients cared for by the Huntington Disease Association in the United Kingdom (UK) indicated that approximately 6,700 individuals in the UK are currently living with HD. This means that 12.4 per 100,000 persons or 1 out of every 8,065 individuals may be affected with HD15. These numbers at best provide a minimum prevalence estimate in the UK
Mike Wooldridge’s passion is working with people with Huntington’s Disease and he has an enormous amount of knowledge having started working in large mental institutions in 1969. “Healthcare wasn’t like it is today and we didn’t have any equipment that supported people with different care needs. In the mid-70s people started looking at solutions that might help people with Huntington’s and one of the first things they looked at were chairs as people with HD have strong involuntary movements and a suitable robust chair was needed that would stop them sliding down or falling out”.
Over the intervening years, Mike has seen various new developments in seating solutions and has recently worked with Repose Furniture and its resident OT Kate Sheehan in the development of the Harlem Porter Chair which Mike believes to be one of the best seating solution he has seen for people with Huntington’s.
“To have input from someone with Mike’s knowledge and experience is invaluable to us as a manufacturer and I know our customers will benefit from this when they see the Harlem Porter chair for themselves” commented Lisa Wardley, Repose’s Managing Director.
Kate Sheehan explains what should be considered when looking for suitable seating for someone living with HD:
“When I joined Repose, the initial design work on the Harlem had taken place. I reviewed it with Helena from Repose and suggested some alterations to ensure the chair’s frame was structurally robust enough to take the involuntary movements associated with Huntington’s and provided the necessary levels of support. A demo model was then taken to Mike at Rapkyns Care Home in Sussex to gather feedback from him and his staff with regards to how the patients found the chair in terms of comfort and practicality.
“The involuntary movements associated with HD can be extremely powerful and puts a huge amount of pressure and wear and tear on all parts of the chair. The constant movement and repositioning means that someone with HD might need up to 5000 calories a day to maintain body weight and weight loss can be significant which puts the client at risk of pressure related issues.
People with HD must have the correct level of support around the head, neck and body to prevent them getting into positions which can affect their posture. The original structure of the chair was reinforced so when someone moves in an unusual way they still receive the core support from the chair with their body shape maintaining a good position. Another factor we took into consideration was maintenance costs. For example, if someone continually puts their leg over the arm of the chair it will eventually wear out the fabric, so we designed each part to be easily replaceable if required.
We also adjusted the seat width and depth to make it slightly longer with longer arms to accommodate movements, as people tend to slide forwards, so it was about allowing that movement without causing extra pressure on the body. It was very much a compromise between what you can achieve whilst still producing a chair that is aesthetically pleasing as HD is such a complex condition”.
Available in small, medium and large, the Harlem Porter has a maximum user weight of 20 stone. Standard features include an independent back rest recline with a range of angles and seat angle adjustment to reduce the risk of a patient falling out due to severe involuntary movements. There is also a deep padded seat area for additional safety and comfort, a choice of 6 interchangeable back styles facilitating different pressure management and posture solutions and four different seat cushion options to accommodate different comfort and pressure management solutions. Additional features include high arms and a sliding padded footplate for ease of patient movement.