Selective Dorsal Rhizotomy

Jim Shannon Excerpts

Wednesday 18th April 2012 Commons Chamber

[Chris Heaton-Harris]

I happily commend their work. I have met Dana and her mother—a very powerful lady who has fought hard for her daughter’s rights and saved a lot of money so that she could have the procedure.

To return to the diary:

“Just these last couple of days she has started to learn to run. Prior to SDR her running technique was no faster than my normal walking pace and she had a swing to her hips that made it look like she would trip at any moment. I now need to walk very fast and sometimes even jog to keep up with her run and she has less swinging of the hips. She is still a long way off the speed and ability of her friends when it comes to running but she is definitely getting better at it.”

The next point is very important:

“Holly has also grown in confidence. She speaks out at school, joins in with activities more and is a nightmare at the park. She climbs up climbing frames that even her 7 year old sister would be wary over. It really is hard to believe that without the operation she would not be able to do these things.”

[Jim Shannon (Strangford) (DUP)]

I am very pleased about the successful outcomes for the hon. Gentleman’s constituent and for the constituent of the right hon. Member for Carshalton and Wallington (Tom Brake). Billy Douglas is three years old and lives in the village of Ballygowan in my constituency. Unfortunately, he has not yet had the operation but is trying to get it. Does the hon. Gentleman agree that it is not just a question of the operation, but the physiotherapy as well? It is a nine-month process and it is very important. Does he think that the NHS ought to make provision not only for the operation but for the physiotherapy? Families are asked to provide £50,000 for the operation and the physiotherapy, but that is beyond the budget of many people. Even with fundraising events it is almost impossible to reach that amount unless the Government or the NHS are prepared to help. Does he agree that we need compassion and financial help for many families across the whole United Kingdom?

[Chris Heaton-Harris]

I absolutely concur. Indeed the final paragraph I wanted to read from “Holly’s Diary” states:

“Finally—we are continuing with Holly’s strict physio programme. She has 1 hour a week from the NHS and we pay privately for a further 2 hours a week from different therapists.”

As we have just heard, for the best results from SDR the operation must be followed by intensive physiotherapy. As an aside, one thing that all the parents who have raised the money for their child’s operation have in common is the basic lack of interest in the patient from the NHS when they return home from abroad, especially when they try to get regular physiotherapy to ensure that their children benefit from the operation to the maximum extent possible. Essentially, the more physio a patient receives in the first years after the operation, the greater the level of ongoing success and the level of manoeuvrability in the patient. Can the Minister help to remedy the situation?