Pressure Ulcers: An SCI person’s Achilles heel

Raquel Siganporia - Partner in the Spinal Injury Team

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Raquel Siganporia

Raquel Siganporia co-wrote the following article which was published in the June 2012 edition of Forward, the magazine for the Spinal Injuries Association.

Pressure Ulcers: An SCI person’s Achilles heel

Anyone who has ever had one will know how quickly they develop and the potential impact they can have on your quality of life. SIA Trustees Raquel Siganporia and John Borthwick want to know your views on what can be done to prevent them from occurring and if they do occur, what treatment do you feel works best for you?

Raquel writes…

John and I have been accepted as Patient Representatives onto a panel to oversee the production of NICE Guidelines on Pressure Ulcers over the next 18 months. NICE is the independent organisation responsible for providing national guidance on promoting good health and preventing and treating ill health.

Both John and I have personal experiences of pressure ulcers. We know that this type of injury can have devastating repercussions and is a major concern for many who have catastrophic injuries. John and I represent everyone who has sustained a pressure ulcer whether they are spinal cord injured, non-disabled or have a complex multiple injuries. Our role is to ensure that the patient’s voice is heard and represented when the National Guidelines are drafted and later published.

Why is it important?

Pressure ulcers represent a major burden of sickness and reduced quality of life for people who experience them and their carers. There is currently no nationally collated data on pressure ulcer incidence, prevalence or the true financial costs to the NHS. Worryingly, the rate is unknown in the community and care homes but we do know that the presence of pressure ulcers has been associated with a two- to four-fold increase in the risk of death in older people in intensive care units.

Why do we need your help?

I sustained heel ulcers within 24 hours of becoming paralysed aged 11. They became infected with MRSA and I required various skin grafts over a 3-month period on bed rest. When I was 21 I sustained a sacral ulcer which ended up requiring surgery. During this time many treatments were tried to heal the ulcer, none of which were successful, mostly due to the fact that the real cause of the ulcer had not been properly identified. John and I know what did and didn’t work for us, but every person’s experience is different, especially as much depends on their individual circumstances. In order to represent as wide ranging a view as possible we would like to hear from you about your experiences.

What do we want to know?

We want to know if you’ve ever had a pressure ulcer or cared for someone who has. How old were you, how ‘bad’ did it become and how long did it take to heal fully?

Prevention:

What sort of things help prevent you from developing pressure ulcers? It could be equipment, techniques, education or nutrition to name a few.

Cause:

What do you think caused your pressure ulcer? Pressure? Friction? Moisture? A device?

Assessment:

How good are your treating team at assessing your risk of developing a pressure ulcer? How have clinicians responded when you have said you have had a pressure ulcer? Do they treat that area as being more susceptible to further breakdown and categorise you as a higher risk? How much is it left to you to inform clinicians or do they take the lead?

Treatment:

Were you given options as to the treatments available and the pros and cons of each? Did the treating health team favour conservative management over surgical intervention? Do you feel this was correct with the benefit of hindsight? What type of treatment did you have?

Quality of Life:

One of the most important factors for a person with a pressure ulcer is their quality of life and how it is affected by having a pressure ulcer. Equally important is how the treatment affects their quality of life for better or worse.

Some say most pressure ulcers are avoidable. This, in my experience is correct. We need your views to help inform the public at large of the pitfalls we face and how this really can become an injury that need not occur.

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