[Insert name of your MP]
House of Commons
London SW1A 0AA
[Date]
Dear [insert full name of your MP]
I am writing to ask you to help achieve much needed change for children and adults living with the rare metabolic disease phenylketonuria, known as PKU. [Describe who has PKU here… eg My 8 year old daughter Lucy has PKU/I am 45 and have PKU. Please feel free to personalise this letter to describe any issues that really affect you.]
PKU is a rare genetic metabolic disorder affecting around 6,500 people in the UK. People with PKU cannot metabolise phenylalanine, an amino acid within protein, which instead builds up to levels which are toxic to the brain. If left untreated, PKU causes profound and irreversible intellectual disability. In the UK, the only available treatment for PKU is dietary management, which involves removing almost all natural protein from the diet to keep phenylalanine levels within safe levels.
The very restrictive diet needs to be maintained for life to prevent impaired brain function. Most people with PKU are only able to eat small amounts of natural protein a day – for example equivalent to the protein in a slice of bread per day. This causes great difficulties for patients and their families. Unsurprisingly, many teenagers and adults fail to adhere to the diet and may begin to suffer with impaired mental health or brain function.
The National Society for Phenylketonuria – the NSPKU – held an event in Parliament for MPs on 28 June 2017 on International PKU Day to raise awareness of the difficulties experienced by their constituents living with PKU.Dr Gisela Wilcox and Professor Anita MacDonald (clinicians working in metabolic care) explained that the UK is failing to provide care which meets the standards adopted for PKU care throughout Europe.
Charlie Box, a young boy with PKU, gave a moving speech to MPs in which he explained how his life changed after his family successfully fought for individual access to a drug treatment for PKU with the help of Kwasi Kwarteng MP. BH4 (Kuvan) treatment is routinely available across Europe but is not commissioned by the NHS.
The NSPKU, with its clinical advisors, have now put together a call for action – with 6 key demands for change. We ask you to support [me/my child/etc] by using your power and influence to champion our agenda for change. [If you have any queries please not hesitate to contact me/I would like to visit you in your constituency office to explain how PKU affects my life and why it is so important that we achieve changes in PKU care.]
Yours sincerely
[Your Name]
[Your address]
[Your email]
[Your phone number]