As a result of pressures on the NHS system, there could be implications on the horizon for sickle cell patients. Sickle cell is classified as a rare disease. Because of this, it falls under “specialised commissioning” in the NHS undertaken nationally by NHS England. This means that treatment is designed to avoid a postcode lottery.–Wherever you live in the UK, you should get the same treatment. This may change soon under new plans from NHS England local commissioners -Clinical Commissioning Groups (CCGs) will share responsibility. We are concerned this could cause problems for patients, and the range and quality of treatment you get will depend upon where you live.
There will be a debate in Parliament on Thursday 15th January—this Thursday! It is important that as many MPs as possible attend. We need to show the government that we care about sickle cell services. We want to help services move forward not backwards. We need your help to show the government we care about our services.
Can you please write to your MP and ask them to attend the debate? We have a template letter below which you can use to get you started, and you can find your MP’s contact details by visiting They Work For You and typing in your postcode. Feel free to add any personal information about your experiences to the letter.
Dear [your MP’s name]
I am writing to you to ask for support regarding NHS commissioning of specialised services. I am affected by sickle cell disease, a rare condition. If NHS England change to local commissioning, I am very worried that I will be affected by a “postcode lottery” in care.
Stephen Gilbert MP has been successful in applying for a Parliamentary debate on national commissioning of specialised services. A three hour debate will be held in Westminster Hall on Thursday 15th January from 1.30pm until 4.30pm. Specialised services work best when planned at a national level. If, as planned by NHS England, local commissioners share responsibility for commissioning the complex services needed, I fear the quality of care will decline significantly. Local commissioners are incentivised to direct funding to local priorities at the expense of people with rare diseases. Ministers need to assure us that NHS England will remain the only budget holder for commissioning of specialised services.
I hope you can find the time to attend the debate and show your support for national commissioning of specialised services.