Health and Social Care Bill

I shall speak to Amendment 81B, to follow on from what the noble Lord, Lord Hunt, said. Brevity will be my watchword, of course, because we do not wish to drag out proceedings. This is a particularly important amendment, referring as it does to commissioning for rare conditions. There are many such rare conditions that people suffer from, but I refer particularly to one called arthrofibrosis, which my wife has suffered from from birth to today. As with many people who have struggled with a rare condition from childhood to the age she is now, it has been difficult to get not just treatment but diagnosis. She was originally not diagnosed with this condition, which is associated with the nervous system and the muscles and mobility. Throughout her life she had the difficulty of being misdiagnosed, and then when she was diagnosed she had difficulty getting treatment. I welcome the amendment for that reason. Many people have that struggle to get the treatment that they need appropriately in their area. For example, we recently went to Birmingham, where they have done some research work. It is so important to get research work done for rare conditions, to establish where they came from and whether people were born with them. I so much welcome—as my wife and others with her condition will welcome, as well as those with other conditions of various sorts—the fact that we are drawing attention to the need for commissioning for rare conditions. You could say that only a small proportion of the public has each rare condition but, when you add all the rare conditions together, there is quite a proportion of people with those problems. I draw to a close on that basis and hope that the Minister will consider this very carefully, as we and many other people have had experience of rare conditions, with the difficulty of diagnosis and treatment and of getting it recognised throughout their lives.