We are often contacted by patients who have been denied access to treatments from which they feel they could benefit. Here are some practical things that you could consider doing to raise this issue and campaign for change.
Contact your local MP
As elected representatives in Parliament, MPs are able to take up issues on their constituents’ behalf. They will want to know if individuals in their constituency are being affected by restrictions on access to treatment. They may be able to help through:
- Liaising with the Government or NHS England on how national policies may be adversely impacting on patients’ care
- Raising the issue in Parliament through parliamentary scrutiny
- Highlighting the issue in the local media
To get a local MP involved in championing a cause, you can:
- Write to them: All MPs can be contacted at: House of Commons, London SW1A 0AA. Their email addresses will be available on the Parliamentary Find Your MP service. The letter or email should clearly set out a summary of your experience and that you are asking for your MP to take up your issue. You can request a meeting, either in Westminster or in your constituency (MPs are usually in their constituencies on Fridays, at weekends and when Parliament is not sitting).
- Call them: The main House of Commons switchboard can be reached on 020 7219 3000 and you can ask to speak to your MP’s office. You can request a face-to-face meeting or opportunity to speak by phone.
- Social media: Many MPs now have a presence on social media platforms. Information on individual MP’s social media contact details can be found on the Parliament website.
- Meet them at a constituency surgery. MPs hold regular meetings in their constituency when constituents can meet them face-to-face. Your MP may put the dates for these on their website, or their office should be able to tell you when they are.
Contact your local media
Local media are often interested in the issues that local people are experiencing with healthcare services. Personal stories can have a huge impact. Local media can encourage MPs to take up a constituent’s issue or campaign or encourage local services to take action.
The contact details for your local newspaper will be in the paper itself or on its website. Once you have found them, you can:
- Write them a letter. Most papers have a specific letter’s to editor email address where you can send your letter. You can either write as an individual, or send a collective letter if you are part of a group of people experiencing the same issue.
- Send them a press release. Local newspapers are always looking for stories. A press release should be sent to their news desk (the news desk email address will be on the website or in the newspaper itself).
- Encourage your local MP to contact them. MPs will be keen to show how they are working on behalf of their constituents. They are likely to have good links with the local press, so can be encouraged to contact local media on your behalf.
The following have a specific interest in rare diseases:
| Name | Position / reason | Address | Number | |
| Mr Jeremy Hunt MP | Secretary of State for Health | Department of Health, Richmond House, 79 Whitehall, SW1A 2NS | mb-sofs@dh.gsi.gov.uk | |
| Lord Prior of Brampton | Parliamentary Under Secretary of State for Health
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Department of Health, Richmond House, 79 Whitehall, SW1A 2NS | lords@dh.gsi.gov.uk
|
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| Dr Jonathan Fielden
|
Director Specialised Commissioning & Deputy National Medical Director | NHS England, Skipton House, 80 London Road, SE1 6LH | jonathan.fielden@nhs.net | |
| Mr Ben Howlett MP | Chair of the APPG on Rare, Genetic and Undiagnosed Conditions | House of Commons, London, SW1A 0AA | ben.howlett.mp@parliament.uk | 020 7219 8755 |
| Rt Hon Sir Kevin Barron MP | Chair of the All-Party Parliamentary Group on Health | House of Commons, London, SW1A 0AA | barronk@parliament.uk | 020 7219 4432 |
| Mr James Berry MP | Parliamentary Private Secretary to Philip Dunne MP | House of Commons, London, SW1A 0AA | james.berry.mp@parliament.uk | 020 7219 4274 |
| Mr James Morris MP | Parliamentary Private Secretary to Jeremy Hunt MP | House of Commons, London, SW1A 0AA | james.morris.mp@parliament.uk | 020 7219 8715 |
| Ms Nicola Blackwood MP | Parliamentary Under Secretary of State for Public Health and Innovation | Department of Health, Richmond House, 79 Whitehall, SW1A 2NS | publichealth.minister@dh.gsi.gov.uk | 020 7219 7126 |
| Mr David Mowat MP | Parliamentary Under Secretary of State for Community Health and Care | Department of Health, Richmond House, 79 Whitehall, SW1A 2NS | david.mowat.mp@parliament.uk | 020 7219 7126 |
| Mr Greg Mulholland MP | Interested Liberal Democrat MP backbench MP | House of Commons, London, SW1A 0AA | greg.mulholland.mp@parliament.uk | 020 7219 3833 |