One of the first things I did when I was diagnosed with Ulcerative Colitis was become a member of Crohn’s and Colitis UK – this incredible charity has so much information available for free on their website, and not only that the literature they create for hospitals and the events they put on for free is just – WOW. The membership is just £19 a month and you get Connect magazine through the door 3 times a year, which is a fab magazine filled with like minded people 🙂 makes me feel less alone tackling this disease.
Anyway – for my UK readers – there is a thing coming up, the *snap* election and CCUK want to make sure that Parliamentary candidates understand more about IBD and how it effects the person, their work and their close relationships. So what can you do? Well they have made it super easy by creating a template – that you can send onto your local MP – click HERE to pledge. At current 1,253 people have sent the email, and I am one of those, and not only that I am one of the ones that has had an actual response from my chosen candidate. Below is my correspondence:
On 29 May 2017 at 18:10, daisyjaneridley wrote:
My name is Daisy Zaaroura and I have lived in the West Hampstead area for the last 6 years. I’m 24 and was diagnosed with Ulcerative Colitis last month. I’m voting Labour in this election for many reasons, one of the main being the absolutely outstanding care I received from the NHS – in particular the Royal Free hospital. However, now that I am coming to terms with my chronic illness, I have to face the facts that this is for life and I’m trying not to let it get me down. So many people in my work and family do not understand this disease and I would really appreciate your support in making it more well-known and supporting Crohn’s and Colitis UK.
As my prospective parliamentary candidate, I am writing to ask you to commit to supporting people, like me, to live as well as possible with Inflammatory Bowel Disease (IBD), without stigma and fear of discrimination.
My IBD, which is a chronic long-term condition with no cure, has had a significant impact on many aspects of my life. More commonly known as Crohn’s Disease and Ulcerative Colitis, IBD can affect daily life, educational achievement, employment opportunities and social relationships.
I am not alone in living with IBD, with 1 in 210 people across the UK affected throughout their lives. Yet, despite its profound impact and cost to both the economy and health services, this condition is too often overlooked and misunderstood.
As my potential future representative in the House of Commons, I am asking you to use the platform of an MP to promote greater understanding of Inflammatory Bowel Disease and its impact. I also ask that you support the work of Crohn’s and Colitis UK and pledge to work with them in the next Parliament to:
ENSURE THAT ALL YOUR FUTURE CONSTITUENTS WITH IBD CAN LIVE WELL
People with IBD should be able to live as well as possible and realise their ambitions, without stigma or fear of discrimination. Information, including practical and emotional support to enable people to live well, should be more readily available. All health services should be knowledgeable about IBD, accessible when people with IBD urgently need them and offer high quality and effective interventions and drug treatments on an equitable basis.
I hope that you will pledge to support greater awareness of IBD, earlier diagnosis, high quality public services and action to reduce the social stigma associated with these conditions.
INCREASE ACCESS TO FULLY RESOURCED IBD SPECIALIST NURSES
IBD specialist nurses are a lifeline to their patients. They help patients to monitor and manage their condition, provide vital information and support, run clinics and telephone advice lines and coordinate complex drug therapies. However, not everyone with IBD has access to specialist IBD nursing support. Two thirds of IBD services in the UK don’t have enough IBD specialist nurses to meet the needs of everyone affected. I hope you will pledge to support people with IBD to be able to access a fully resourced IBD specialist nurse.
ENABLE YOUR CONSTITUENTS WITH IBD TO GET THE WELFARE SUPPORT THEY NEED
People with IBD struggle to access the financial support they need when they are too sick to work or when they require help paying for extra costs associated with their condition, for example, travel to hospital appointments or higher utility bills. I hope you will pledge to help tackle the financial disadvantage associated with long-term conditions and to secure a root and branch reform of the current welfare benefits system.
I very much hope you can support these pledges and I look forward to your response.
And the lovely Tulip responded, not only did this mean a lot to me, but it also reassured me that I have made the right decision locally.
Thank you so much for getting in touch and informing me of your recent diagnosis with a chronic illness. Before I address the points in your email, I want to offer my general support should I be able to help raise awareness or champion a particular aspect of the campaign for you.
I can completely empathise with your support for the Royal Free – it is a fantastic hospital full of dedicated professionals, and in the past, I have relied on their support myself.
I am glad to hear you believe Labour is the Party best suited to addressing the concerns within your email – I believe it is right that our party believes in investment rather than cuts for the NHS. We believe that the current system is too fragmented and that we should be looking to offer a future of joined up services from home to hospital. The service as it stands clearly isn’t designed for the growing numbers of people living with chronic conditions.
You have my absolute assurances that if re-elected on June 8th, I will promote greater understanding of Inflammatory Bowel Disease and its impact. I will also support the specific work of Crohn’s and Colitis UK.
However Daisy, it’s going to be an incredibly close contest here, and every vote will count. Please feel free to spread the word about my candidacy and urge family or friends to get in touch if they are unsure who to vote for ahead of this election.
Best wishes and best of luck for your future treatment,