The Sickle Cell Society participates in coalition work, working with other organisations to achieve our goals. Two recent reports have come out from our alliances which have implications for sickle cell patients.

The Genetic Alliance, of which we are a member, has published a new patient charter, addressing issues it has identified with how medicines for rare conditions are considered for NHS funding. It noted that patients in England are often prevented from accessing the medicines they need because NHS England’s commissioning arrangements are, overburdened, and under-resourced. The commissioning arrangements cause delays in access to potentially life-saving new medicines on the NHS.

86 groups, including the Sickle Cell Society, endorsed the patient charter, which provides six recommendations for improving the situation and ensuring fairness for patients with genetic conditions:

  1. All seven of the appraisal and commissioning routes for rare disease medicines should be considered objectively
  2. Greater patient voice is essential in decisions as to what should, and what should not be commissioned by NHS England
  3. NHS England and the patient community need to work together to strategically address the financial sustainability of the commissioning of rare disease medicines
  4. For NHS England to fulfil its organisational promises to be ‘open and transparent’, ‘prioritise patients in every decision’ and ‘listen and learn’, it must optimise existing communications and engagement platforms
  5. NHS England’s Clinical Reference Groups should be granted additional resources to support their ability to give expert advice, and enable consistent decision-making and effective stakeholder engagement
  6. NHS England’s appraisal process needs drastic streamlining and rationalisation to enable timely, patient-focused and transparent commissioning of rare disease medicines

You can read the full report here [pdf]

We have also worked in collaboration with Rare Disease UK, an offshoot of the Genetic Alliance. Rare Disease UK have released a report about transition between care providers. We have known for some time from patients and their families as well as clinicians that there are significant challenges for young people in transition between care providers. Young people with rare diseases must move from paediatric to adult care, and the report highlights a number of challenges they face, including:

  •  A lack of age-appropriate services for adolescents
  •  Insufficient training for medical professionals
  •  Transition coming as a shock for patients
  •  Parents feeling unsupported

These challenges apply to young people with sickle cell and those with rare diseases. The report also noted that transition tends to be better for those with common conditions.

Case studies are provided to show best practice for transition care, addressing the problems highlighted.

You can download the full report here [pdf]