HELP & SUPPORT

Our partners have provided some resources around a variety of issues that feature in the film.

 

What is cystic fibrosis?

Cystic Fibrosis is a genetically inherited condition that slowly destroys the lungs and digestive system. Living with it involves a daily burden of hours of time-consuming physiotherapy and a vast intake of drugs just to stay healthy. And still only half live to see their 40th birthday.

The Cystic Fibrosis Trust?

The Cystic Fibrosis Trust is the only UK-wide charity making a daily difference to the lives of people with cystic fibrosis, and those who care for them. They’re committed to beating cystic fibrosis by investing in cutting edge research, driving up standards of care, providing support and information for all and campaign hard and shouting loud about the issues that matter.

Learn more

If you or someone you know has been recently diagnosed with cystic fibrosis it can be overwhelming, but the Cystic Fibrosis Trust can help with information and support. Find out what causes cystic fibrosis, what it's like living with the condition and how care is delivered in the UK. Read some Frequently Asked Questionspublications and factsheets, and links to other websites for more information.

Helpline

Cystic Fibrosis Trust helpline: 0300 373 1000 or 020 3795 2184.

Everyone needs a helping hand sometimes, whether it's guidance with a specific problem or just a friendly, knowledgeable person to chat to. The Cystic Fibrosis Trust operates a confidential helpline offering general advice, support and information on any aspect of cystic fibrosis, including help with financial support. The helpline is open between 9am and 5pm, Monday to Friday. You can also email your enquiry to helpline@cysticfibrosis.org.uk. We will respond to your email within three working days. Calls to 0300 numbers cost no more than 5p per minute from a standard BT residential landline. Charges from other landlines and mobile networks may vary, but will be no more than a standard geographic call and are included in all inclusive minutes and discount schemes.


 

Who We Are

At Live Life Give Life, we are all personally affected by organ donation; some of us are organ recipients, some are donors or people who donated a loved one’s organs, and some are survivors of those who didn’t get their transplant in time. It is because of our personal stories that we are united and passionate about telling people how important and wonderful organ donation is. 

What We Do

As a charity we want to encourage people to register as organ donors. Through awareness campaigns, events and activities we aim to raise the profile of organ donation and increase the number of people signing the organ donor register. We want the whole concept to become less taboo and more of a celebration, knowing that, as a donor, you might possibly save a number of other lives.

We also fund initiatives to improve the welfare of (and outcome for) patients in need or receipt of organ and tissue transplants, in addition to supporting the public recognition of donors and their families.

By raising awareness we can, ultimately, save lives.

What if I want to become a donor?

If you want to become an organ donor, please register your wishes on the NHS Organ Donor Register: organdonation.nhs.org

At LLGL, we know that discussing your decision is as important as signing the register. We ask that you take this opportunity to “have the conversation” with your family and friends.  Even though you may have signed the register, when the time comes your next of kin can still overrule your wish at this darkest time of their lives because you did not inform them when you were alive. If they are aware of your wishes, it makes this traumatic moment a little easier for them to give their consent. 

Please explain to your loved ones just how donating your organs and tissues will save and transform many lives through transplant.

For more information on either LLGL or organ donation please visit www.livelifegivelife.org.uk or emailinfo@livelifegivelife.org.uk

Case Studies


 

Who are we?

Dying Matters is a coalition of 30,000 members across England and Wales which aims to help people talk more openly about dying, death and bereavement, and to make plans for the end of life. 

Since the Dying Matters Coalition was set up in 2009, they've created a wide range of resources to help people start conversations about dying, death and bereavement. Below are a some links to resources for those who may be facing bereavement.

Coping with bereavement

http://www.dyingmatters.org/page/coping-bereavement

Self-help strategies for bereaved people

http://dyingmatters.org/page/self-help-strategies-bereaved-people

Planning ahead for the end of life

http://www.dyingmatters.org/page/planning-ahead

Case Study

Hearing about others' experiences can be helpful when dealing with death and bereavement.

Read Beth's organ donation case study: How honouring Beth's organ donation wish helped us cope with her death