Pseudoxanthoma Elasticum

Andrew Griffiths Excerpts

Thursday 18th October 2012 Commons Chamber

[Andrew Griffiths (Burton) (Con)]

May I begin by thanking you, Mr Deputy Speaker, and Mr Speaker for allowing me to make a brief contribution to this Adjournment debate? I congratulate my hon. Friend the Member for Enfield North (Nick de Bois) on the work that he has done on this important issue. He talked about the support group, and I am delighted to say that he has been a great friend of the PiXiEs. His continued support in raising the issue has gone a long way to reassure sufferers that somebody is taking notice and that somebody cares about the terrible situation in which they find themselves.

As my hon. Friend said, I come to this debate because of a constituency case. Mrs Dawn Thomas came to my constituency surgery a few months ago. Hon. and right hon. Members will know that MPs’ surgeries are quite often the destination of last resort. People come to us in desperation when they have tried every other avenue and taken every other opportunity. They have asked everybody else they can think of for help; they then come to their MP and expect us to deliver what others have not been able to deliver. Often we are put in a difficult position, but I can honestly tell the House that when I was confronted by Mrs Thomas and her husband my heart went out to them. Theirs was a desperate situation, and one that in the 21st century we surely cannot allow to continue.

Let me put the matter in context. Mrs Thomas is a young woman—she is 44 years old—and she is a mother. She plays an active role in her community. She works as a secretary in a local haulage company. She enjoys playing darts. She has never claimed benefits; she pays her taxes. She has done everything right in playing her part in the big society, yet she was diagnosed with PXE at the age of 21—I congratulate my hon. Friend on his dexterity in using the technical terminology in his speech, but I will take the easy option and refer to it as PXE. In the meantime, Mrs Thomas lost the sight of her left eye as a result of another illness. She had no real symptoms of PXE until about two months ago, when her sight began to deteriorate rapidly. In desperation, she went to her GP, who referred her to a consultant. The consultant gave her the devastating news that she had PXE and that she would go blind.

There was hope, however, in that there was a treatment out there that could save Mrs Thomas’s sight and allow her to lead her life as she knew it. She applied for the treatment but was refused by the primary care trust. She appealed, and received a devastating, formal, bureaucratic letter that told her in no uncertain terms that she would go blind. To receive such a letter must be a dreadful experience for a wife and mum. That is why she came to see me.

The story was taken up by my local newspaper, the Burton Mail, which campaigned on Mrs Thomas’s behalf, and by the national press. I am grateful to South Staffordshire PCT for looking again at her case. At the first appeal, however, it said that her case was not exceptional enough. I would say that anyone’s sight was exceptional, and that we should do all that we can to save it. I am delighted to say that the PCT reviewed her case, and that she is now receiving the treatment that she deserves.

The PCT has confirmed to me that the cost of treating Mrs Thomas with Lucentis is £18,000, while the cost of Avastin is just £8,000. Let us compare either of those sums to the cost to the taxpayer if she were to go blind. She would be unable to work, and she would be forced to claim benefits. Surely it makes economic sense for the Government to give her the treatment that she needs at an early stage, so that she can keep her sight and continue to lead the life that she loves. I am sure that the House will understand that no MP wants to be in the situation that I found myself in when I had to tell Mrs Thomas that the NHS could not help her, and that she was facing blindness.