Many people with Spina Bifida will, at some point, develop a pressure sore. This is usually no one's fault and there are many things that can be done to prevent them. However, it is important to understand what causes them in order to be able to prevent them.

Causes
Poor circulation below the waist means that the cells do not receive adequate supplies of oxygen and nutrients to keep them healthy. Nor do they get rid of all their waste products. A system of the body, called the lymphatic system, works together with the circulation to remove fluid and waste products. This also does not work as efficiently as it should in people with Spina Bifida, so there can be a build-up of fluid in the legs. This is called oedema. All these things together mean that pressure sores can develop very rapidly and heal very slowly. Neurological (nerve) problems associated with Spina Bifida and the resulting loss of feeling means that little or no discomfort is felt and therefore there is no trigger telling you to move and reduce the pressure on a particular part of the body. Incontinence will cause the skin to become even more prone to damage as both urine and faeces contain substances that break down the skin and cause it to become infected.

Prevention (reducing the risk)

Change your position every 20 minutes. Lift your bottom off the chair and change the position of your legs. This allows the blood to flow normally for a few seconds (that is all it needs!). If it is too difficult to lift your bottom, try to change position; leaning forwards or to one side first and then the other.

Regular inspection of the skin. Ideally the whole body should be inspected night and morning for signs of any redness or changes in the skin. If you find a red patch and it disappears quickly after you have eased the pressure in that area, there is no cause for alarm. But if the red colour remains, this could be the first sign of a sore developing. A close eye should be kept on this area and no further pressure should be put on it. A long-handled mirror is very useful for inspecting the back and bottom!

Diet.  A good balanced diet is essential for both the prevention and healing of pressure sores. An adequate intake of fluids helps to keep the skin supple and hydrated. Complex carbohydrates (bread, rice, pasta) will keep the muscles healthy. Iron-rich food, such as spinach, will help the blood carry the oxygen around the body to the cells. Vitamin C and zinc (a mineral) both help wound healing, as does an adequate supply of proteins (found in meat, fish and dairy products).

Wear suitable clothing. Avoid clothes that are too tight or have hard seams, zips or buttons that might cause pressure. Good fitting shoes, with the feet put in properly, are essential. Take care when transferring from your wheelchair not to knock or drag the body. Barrier creams, such as Sudocrem, Conotrane or Zinc and Castor Oil Cream, can be useful protection for the skin against incontinence, but the most important protection is to clean up and change as soon as an 'accident' has happened.

Hospital admissions
If you have to go to hospital and will be spending more time than usual in bed, ring the ward and tell them before you go that you will need a pressure-relieving mattress. Operating theatres also need to be aware of your needs before you have an operation. A visit before admission will be useful to you and to the staff. If you have to visit the Accident & Emergency Department, do remind them as soon as possible of your high risk of developing sores. The staff should then make sure that you are not left on a hand trolley or in a wheelchair without help to move around every 20 minutes or so.

Treatment
If a sore develops, it should be assessed as soon as possible by a specialist nurse or doctor who will 'grade' it and start the most appropriate treatment. There are many different products available for treating pressure sores and it would be impossible to list them all here. However, this is a rough guide:

• If the skin is red, but not broken, a second 'skin' may be used, such as Op Site or Tegaderm, to help prevent any further breakdown.
• If the skin is broken, but not infected or bleeding, something such as Comfeel, Granuflex or Allevyn would be applied. These dressings should not be changed every day unless they have become detached.
• For deep sores a gel, such as Intrasite or Granugel, may be used. These are very good for the sore, but can ooze so the top dressing may need changing every day (sometimes twice a day). These gels can also be used for infected wounds. These are just some examples of the many products on the market and when they might be used. It is not meant to be a definitive guide and we do not endorse the use of any of the named products or any not listed.
• The best treatment of all is relief of pressure from the affected area. Special cushions and mattresses are available and the community team (occupational therapist or nurse) is responsible for assessing and arranging provision of these.
• If there are recurrent sores, it may be that a further assessment of pressure relief aids, including e.g. equipment - such as wheelchair and lifestyle - needs to be made.

Pressure sore prevention

1. Lift your bottom from your chair every 20 minutes.
2. Change the position of your legs at the same time.
3. Check your skin all over your body at least once a day (twice is better).
4. If you are wet or soiled, the quicker you clean up and change, the better.
5. Take care when transferring from your wheelchair.
6. Eat a healthy balanced diet including a variety of fruit and vegetables, and drink plenty of clear fluids.