The Neurological Alliance has released a report that details the experiences that rare, neurological disease patients in the UK share and calls for improvements for these people. Experts in the field and members of the Alliance contributed to the report to ask for better treatment and care. You can find their full report here.
Living With a Rare, Neurological Disease
While the number of people living with a rare, neurological disease is approximately equivalent to that of other conditions, such as forms of cancer, these people do not receive the same standard of care. They are often forgotten when it comes to their treatment, face gaps in their care, and wait longer periods to see specialists. COVID-19 has done nothing but exacerbate these problems as well.
It is these issues that pushed the Neurological Alliance to write their report.
What They’re Calling For
One problem that rare disease patients face is stigma. To combat this negative view, the report calls for a change in the perception that surrounds rare neurological conditions. These conditions are complex, leading many people to dismiss them. The report stresses that just because one’s disease is complicated, it does not mean that it cannot be well managed. It deserves equal access to treatment.
In order to reach treatment, one has to see a specialist and receive a diagnosis. This leads to the next call to action in the report: quicker access to specialists and correct diagnoses. On average, these patients wait three to five years to receive a diagnosis. To combat this problem, the report pushes for increased awareness within the medical community. With more knowledge, they will be able to refer patients to specialists sooner, therefore leading to earlier diagnosis and treatment.
Not only do physicians need more knowledge on these rare conditions, so do patients. Only one third of patients and their families are provided written information on their disease upon diagnosis, a survey conducted by the Alliance found. To fix this issue, they ask that doctors provide written explanations of a patient’s diagnosis.
Faster access to treatment is another request that the report makes. Within Europe, the UK often moves at a slower pace when it comes to approving and funding treatments for rare, neurological conditions. The Batten Disease Family Association explains the severity of this problem; patients can die while waiting for approval and roll-out of treatments.
The severity of these problems often takes a toll on patients as well. In fact, under one third of these patients feel that they receive adequate mental health services. In a survey released by the Alliance, every charity asked stated that those who they represent receive minimal mental health at best. Because of this, one of the requests that the report makes is better access to mental health support.
The final request is in regards to social care and home adaptations. The Alliance calls for proper, well-funded support for rare, neurological disease patients.
Looking Forward
Along with these calls to action, the report includes patient statements. They detail the obstacles that they have faced in terms of diagnosis, awareness, and treatment. Hopefully these patients will be able to see the changes listed in the report, as they deserve better care.
