Write to your MP

RE: Support for GAIN (Guillain-Barré Syndrome and Associated Inflammatory Neuropathies)

Dear [MP’s Name],

I am writing to you as one of your constituents to raise awareness about Guillain-Barré Syndrome (GBS), Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), and other related inflammatory neuropathies, as well as to seek your support for GAIN (Guillain-Barré and Associated Inflammatory Neuropathies), the only UK charity dedicated to supporting people impacted by these life-changing conditions.

GBS and CIDP are rare but serious conditions that impact the peripheral nervous system, which can lead to severe and long-lasting disability. They affect around 1,500 people in the UK each year. These conditions can develop suddenly and without warning, leaving individuals and their families facing profound physical, emotional, and financial challenges. While some people recover fully, others live with long-term effects that can severely impact their quality of life.

GAIN plays a critical role in supporting people impacted by these conditions by providing essential information, advice, and emotional support. The charity also funds and conducts research to improve the understanding and treatment of GBS, CIDP, and related neuropathies. Moreover, GAIN works tirelessly to raise public awareness about these conditions to ensure that more people can receive timely diagnoses and appropriate care.

As a Member of Parliament, I urge you to champion the cause of those impacted by GBS, CIDP, and similar conditions by:

• Raising Awareness: Please consider using your platform to highlight the challenges faced by those living with these rare conditions and to promote the work of GAIN
• Supporting Funding and Research Initiatives: Advocate for increased government and NHS support for research and treatment related to GBS and CIDP
• Championing Patient Access: Help ensure that people impacted by these conditions have timely access to the best possible diagnosis, treatments, support services, and rehabilitation, which can significantly impact their recovery and quality of life
• Meeting with GAIN: I encourage you to meet with representatives from GAIN to learn more about their work and the challenges they face in supporting people impacted by these conditions. You can find out more about GAIN at www.gaincharity.org.uk

Your support could make a tremendous difference in the lives of individuals and families across the UK who are affected by these devastating conditions. Thank you for considering this request, and I look forward to hearing from you about how you can help raise awareness and support for this important cause.

Yours sincerely,

[Your Name]

[Your Signature if sending a hard copy]

Dear Secretary of State, 

I hope this letter finds you well, and I hope you have settled into your new role. I don’t envy you your inbox, but hopefully I have allowed enough time since your successful election to have avoided all the other demands from charities and community groups. 

I am writing to introduce you to GAIN (Guillain-Barré and Associated Inflammatory Neuropathies), the only UK charity dedicated to supporting individuals impacted by Guillain-Barré Syndrome (GBS), Chronic Inflammatory Demyelinating Polyradiculoneuropathy (CIDP), and other related inflammatory neuropathies. Our charity provides vital services, including support, information and advice, and financial assistance to individuals impacted by these rare but life-changing neurological conditions. Additionally, we fund and carry out research, while actively raising awareness of these conditions, which, although uncommon, can have a profound impact on people’s lives. 

I would like to take this opportunity to draw your attention to the charity and the needs of our members, and in particular a number of critical issues that require urgent consideration and action: 

1. Delayed diagnosis and Misdiagnosis: One of the most common challenges reported by those impacted by GBS and related neuropathies is the delay in receiving a correct diagnosis. Misdiagnosis often leads to delayed treatment, which can result in prolonged suffering, unnecessary complications, and, in some cases, life-altering outcomes. Early diagnosis is crucial to improving the chances of recovery and preventing severe disability. However, our members frequently report that healthcare professionals are not sufficiently aware of these conditions, leading to delays that have a devastating impact on their health and wellbeing. 

1. Inconsistency of Treatments and Approaches – There is a marked inconsistency in the treatment options offered to patients across the country. While there are guidelines and pathways in place to ensure approaches are consistent, we have noted that the type of treatment (both acute and long term) can differ significantly depending on where you live, who your consultant is, and the availability of treatment options. Many of our members depend on plasma based IVIG treatments, yet these are often provided in markedly inconsistent ways. The lack of a standardised approach to treating GBS, CIDP, and related conditions often leaves patients navigating a fragmented healthcare system, resulting in inequality in care and outcomes. 

1. Lack of Data – There is currently insufficient data collection around GBS and related conditions in the UK. Without comprehensive and up-to-date information on the number of people impacted, their experiences, the long-term outcomes, and even their symptoms, it is challenging to effectively advocate for improved services, treatments, and research funding. Data gaps also hinder our ability to develop more targeted interventions and ensure that resources are allocated where they are most needed. 

1. Geographical Inequalities in Specialist Support – Many of our members report significant geographical inequalities in accessing specialist support and centres of excellence. In some parts of the country, patients can access expert care and specialist centres, but in other areas, they face long waiting times, must travel great distances for treatment, or cannot access specialist support and input. It is an established fact that Neurological Specialist Services are dispersed unequally across the country, and that many people do not get fair access to services. This disparity creates an unjust and unequal healthcare experience for those already dealing with the difficulties of these serious conditions. 

1. Ongoing Support – Our members who face acute conditions such as GBS, are often left with little ongoing support from the NHS or Social Care after they have been discharged from hospital, even though they are often left with significant residual symptoms, ongoing mobility issues, and disabilities. Those facing chronic and often progressive conditions such as CIDP, often feel like they are left with very little ongoing support post diagnosis. This is in stark contrast to other more well-known conditions such as MS where there are often specialist nurses in both acute and community settings providing ongoing support. Many of our members struggle with accessing ongoing specialist physiotherapy, and GPs who should act as ongoing care co-ordinators often have very limited experience and knowledge of these conditions. While GAIN is here to support where we can, many of our members feel let down by the health and social care systems, and are often isolated and dependent on others. 

1. Emotional Support – Most people who are impacted by GBS, CIDP, or one of the related conditions, have often been through an incredibly traumatic experience. This may be intensive care, the diagnosis of a life altering condition, or a significant loss of self. This experience is often overlooked along with the emotional impact, and while physical health should be paramount (especially when it is life threatening), the mental and emotional impacts are inevitably and universally overlooked. A lucky few are offered limited low level emotional support at a primary care level, but the long-term impacts are still not being identified or addressed. 

As the Secretary of State for Health and Social Care, your leadership and advocacy are vital in improving the health and social care landscape for individuals affected by GBS, CIDP, and other inflammatory neuropathies. I would like to invite you to engage with GAIN to discuss how we can work together to improve outcomes for those impacted by these conditions. Your support in addressing the issues outlined above would make a significant difference in the lives of many individuals and their families across the UK. 

GAIN does not receive government funding and relies on the generosity of public donations to continue providing services, funding research, and advocating for better care and support. We believe that with your input, we can increase awareness, improve access to specialist treatments, and ensure that all individuals impacted by GBS, and related conditions receive the support they deserve, no matter where they live. 

We would welcome the opportunity to meet with you to further discuss these issues and explore how you can support our efforts to improve the lives of those living with these rare and complex conditions. Thank you for your time, and we hope to hear from you soon. 

If there is any further information that you need then please do not hesitate to get in touch via rich@gaincharity.org.uk or on 01529 469910. 

Many thanks 

Rich Collins 

Chief Executive 

Guillain-Barré and Associated Inflammatory Neuropathies