Janet Daby

I thank the Minister for the Bill. I put it on record that I am chair of the all-party parliamentary group on sickle cell and thalassaemia. I rise to speak to new clause 162. It is well known that the NHS commissions specialised services unevenly across England. I am confident that this Government’s ambition is to end the postcode lottery of specialised services, and I would like to hear more about that. New clause 162 is designed to do something simple: to ensure that Parliament can identify where inequalities exist, measure where they are improving and hold the Secretary of State to account when they are not. I will make the case for the provision through the experience of people who live with sickle cell. Sickle cell disorder is the fastest growing serious genetic condition in England. It causes episodes of serious chronic pain, spasms and a crisis that will continue if left untreated. It can damage organs and frequently requires hospital care. When the crisis strikes, patients have to attend A&E and wait for hours, often only to be seen by medical staff who may have little or no familiarity with their condition. Due to past experiences, many sufferers do not trust the NHS to meet their needs, and stories of sufferers who have died in hospital due to complications, such as Evan Nathan Smith, are well known. In 2021, the “No One’s Listening” report demonstrated that people with sickle cell need to be listened to. That report prompted NHS England to act. It initiated the sick cell and thalassaemia quality improvement programme, from which came seven pilot emergency department bypass units. These dedicated facilities allow sickle cell patients to avoid A&E and receive immediate care to bring a crisis under control. The service works, but there is a problem, which brings me to the new clause. When the APPG met last week, we heard from stakeholders that this progress is fragile. There are only seven bypass units across the country, and with the transfer of commissioning responsibilities under the Bill, there is a real and legitimate fear that what has just begun to be built will not be protected to continue.