Responding to consultations: Making sure the Inflammatory Neuropathies Community is always heard

One of the questions I am asked, is why Inflammatory Neuropathies UK spends time responding to consultations from organisations like the NHS, NICE, and various Government departments. Couldn’t that time be better spent? 

The answer is actually quite simple. If we don’t get involved, then the voices of people impacted by Inflammatory Neuropathies may not be heard. 

Obviously, the biggest part of our role is providing information, support, and connection. But another important part is making sure decision makers understand the real experiences of people living with conditions such as Guillain Barré Syndrome, CIDP, MMN, and other Inflammatory Neuropathies. 

Over the past few months, we have been involved in several important consultations. 

One example was the NICE appraisal of efgartigimod, a potential new treatment option for CIDP. NICE is the organisation that decides whether treatments should be available on the NHS. When they assess a new treatment, they do not just look at clinical evidence. They also want to understand what living with a condition is really like. Our response focused on the experiences of people living with CIDP, the impact the condition has on daily life, and why having more treatment options matters. We wanted to ensure that patient experiences were given the same attention as the clinical data. 

We also recently responded to the Government consultation on SoHO, which stands for Substances of Human Origin. This covers things such as blood (including plasma), tissues, cells, and other donated human materials used in healthcare. It may sound technical, but these regulations help shape how treatments are developed, provided, and monitored in the future. Our focus was making sure that safety, quality, and patient outcomes remain at the heart of any changes. Most importantly, we wanted to ensure that the experiences and interests of patients are not lost amongst technical discussions. After all, so many of you rely on plasma derived medicines, which would be impacted by any change to these regulations.

Another consultation we contributed to was NICE's review of the EQ-5D-5L value set. That might sound like a mouthful, but it is essentially a tool used to measure how health conditions impact on people's quality of life. These measurements are often used when decisions are made about treatments and services, and you have probably all had an assessment using them. The concern for many rare and complex conditions is that standard measurements do not always capture the full picture. Fatigue, pain, uncertainty, loss of independence, emotional wellbeing, and the impact on family life can all be difficult to measure. Our response highlighted why it is important that these experiences are properly reflected when decisions are made, and that any change in use doesn’t negatively impact someone with an Inflammatory Neuropathy. 

These consultations may not always grab the headlines or make the news at all, but they do really matter. The decisions made through these processes can influence treatments, services, research, funding, and future policy. They can change how conditions are understood or looked at, and how support is provided for years to come. 

As a charity, we have a responsibility to bring the voice of the community into those conversations. So, every survey you complete, every story you share, every Get Together you attend, and every piece of feedback you give us helps us to do exactly that. 

When we submit a consultation response, it is not just the charity speaking. It is thousands of people impacted by Inflammatory Neuropathies sharing their experiences through us. It’s your view helping to shape the future. 

That is why we get involved. Because your views are vital, because decisions are better when the people they impact are heard, and because your voice is important.