Contact your MP to Raise Awareness of CRPS

WHY contact your Member of Parliament (MP)?

Your MP is the person elected by those living in your voting area (known as a 'constituency') to represent your views and concerns at government level.

Their role is to create positive change for the people, like you, in their constituency and raise awareness of what is important to you within the UK Government.

Make sure they understand CRPS and how it impacts others locally. Let them know what you want to be done differently to improve the lives of CRPS warriors.

If you live in Northern Ireland, Wales, or Scotland you may prefer to contact your representative in your devolved parliament:

• Northern Ireland - Members of the Legislative Assembly (MLA)
• Wales - Members of the Senedd (MS)
• Scotland - Members of Scottish Parliament (MSP)

WHO is your MP?

To find out the name of your MP visit the 'Find Your MP' page on the UK Parliament website and enter your postcode.

Alternatively, use the website TheyWorkForYou to establish who your MP is. 

HOW to contact them?

Find Your MP will provide the contact details you need - or simply type your postcode into the envelope below.

It is increasingly common to raise issues and concerns via email, but please do write a postal letter to your MP if you are more comfortable doing so.

Some MPs hold local meetings, known as surgeries, where you can talk to them in person. Their website, or your local library, will usually have details of the next surgery.

WHAT should you say?

Follow our best practice tips when crafting your message to your MP but, most importantly, be you!

We've also created a template email to help get you started.

Tips & suggestions when emailing your MP:

• Only contact your own MP - they cannot act for people outside their constituency.
• Make sure you make clear the area in which you live so they can be sure that you are within their constituency. We suggest including your postcode in the email.
• Your message does not have to use formal language. As long as you are polite, write however feels best to you.
• Decide on the one or two key messages related to CRPS that you most want action on and focus your email on them. This could be increasing awareness of the condition amongst GPs or getting access to a specific CRPS treatment in the UK. You could also choose to support one of Burning Nights' campaigns - get in touch and we'll let you know what we are working on. There are probably lots of things you'd like to change for CRPS warriors, but identifying your top priorities and communicating them clearly will achieve the best results.
• Include some background and facts about CRPS as your MP may not have heard of the condition. You can find information to explain what CRPS is on the Burning Nights CRPS Support website.
• At the heart of your message should be evidence of why the issue you are bringing to their attention is important to local people diagnosed with CRPS. Include as much of your lived experience as you feel comfortable with - personal stories bring the case for change to life. If you can, include examples of where the change you're calling for has already happened and the difference it has made.
• Make sure to include what action you'd like your MP to take on your issue and the ultimate outcome you'd like to see.

Example email message:

Please remember that personalised and tailored messages have the greatest impact. Bulk copy and paste messages are unlikely to be effective.

EMAIL SUBJECT TITLE:

Complex Regional Pain Syndrome (CRPS) Awareness

EMAIL TEXT:

To [insert name of your MP],

PARAGRAPH 1: outline your key CRPS message, highlight your constituency, and include facts & background to CRPS.

I live in your constituency of [insert your constituency] and am writing to ask for your support in [include your key message e.g. raising awareness of Complex Regional Pain Syndrome with health professionals.]

Complex Regional Pain Syndrome (CRPS) is a chronic debilitating pain condition that can affect anyone at any time - both adults and children. It is often triggered by an injury, like a broken bone, but can be caused by heart attacks, strokes, needle stick injuries, nerve damage, surgery, insect bites, and, for 10% of patients, it appears spontaneously with no apparent cause.

The resulting pain is severe and long-lasting, and always out of proportion to any original injury. The affected body part can become so sensitive that the smallest touch, even a gentle breeze, causes intense pain. It can lead to extreme swelling, ulceration of the skin, wasting tissue, and bone thinning.

The pain, and other symptoms, may spread over time.

The Department of Health does not collect data on the number of people diagnosed with CRPS, but the most widely accepted figures are that 26 people per 100,000 are diagnosed every year with CRPS. This equates to more than 15,000 people in the UK diagnosed with CRPS each year.

PARAGRAPH 2: set-out your case for change supported by evidence and/or personal experience.

[Include your personal experience of CRPS, whether you are a patient or care for someone with CRPS, and how a change to the issue you are raising would have made a difference to you. If you can, give examples of where the change has already happened and the impact it has had. Please refer to information or patient stories on the Burning Nights CRPS Support website if helpful.]

PARAGRAPH 3: include what action you would like your MP to take and the outcome you are striving for.

I am passionate about the need to raise awareness of Complex Regional Pain Syndrome (CRPS) and I would be extremely grateful if you would [include a specific action you would like your MP to take.]

Thank you in advance for your support. I look forward to hearing from you.

Kind regards,

[your name and any contact details you'd like to include]

WHEN will you get a response?

In general, your MP will let you know how long they'll take to respond via an automated reply. If you don't hear back from them within this time, email again (including your original message) and gently chase them for a response.

If you would like help contacting your MP to raise awareness of CRPS, please get in touch with us at Burning Nights CRPS Support.