Patient & Family Support Network...
For many patients and their loved ones, being diagnosed with an illness or serious injury can be a huge shock to the system and it can sometimes be difficult to see how to cope with it all.
At Leeds, we make every effort to look after you and your family and we are always happy to chat with you and to explain what is going on and where we go next. We don’t expect you to take everything in first time, so don’t be afraid to ask again if you’ve forgotten something or are unsure about something.
For those who are diagnosed with brain tumours, we have dedicated specialist oncology support nurses to help you every step of the way through your treatment (further information).
We have a specialist head injury service based at the Centre for Neurosciences at the Leeds General Infirmary, which is committed to providing comprehensive care and support to all patients and their families who have sustained a traumatic brain injury (further information).
We also have a specialist neurovascular nurse at the Leeds General Infirmary, which is committed to providing comprehensive care and support to all patients and their families have suffered a cerebral aneurysmal bleed, or may have a cerebral aneurysm or other vascular problem that requires treatment (further information).
Sometimes people have concerns about where to turn when they go home or perhaps would like someone to talk to about non-medical things to do with what’s going on – whatever the reasons, there is a lot of support available and there are some excellent charity groups who will be happy to help and have useful websites full of more information.
Sometimes it’s just nice to know that these people are out there as an option, even if you don’t want to speak to them directly.
Below are some links to some excellent groups, many of which are based locally, who have a wealth of advice and experience and who will be happy to help.
If you know of any other groups, please do not hesitate to ask and we can add them to this page!
The vision of Brain Tumour Research and Support (formerly known as Andrea’s Gift) is clear and simple – we want to cure a devastating disease that affects so many people. Whist we are waiting for the cure, we will provide the best patient and family support network we can.
Around 9,000 new cases of primary brain tumours are diagnosed in the UK each year. Across Yorkshire and the Humber we estimate there are 1,000 patients diagnosed each year, around 50 of these will be children.
BTRS set its objectives as follows:
- To raise funds to support specific and dedicated research projects into the treatment and cure of child and adult brain tumours, and to ensure that all research is written up for publication and communicated with other charities and research organisations.
- To provide grants or financial assistance to brain tumour patients and their carers.
- To provide equipment and apparatus to hospital wards, patients or research centres.
A network of local Groups and Branches throughout the UK and Channel Islands offers a wide range of services, including rehabilitation programmes, carer support, social re-integration, community outreach and respite care. The services available will vary, depending on local needs and resources.
Headway UK provides support to the local Groups and Branches and helps to deliver high quality services through guidance on policies, procedures, standards and training. Additionally:
- The Headway Helpline provides information, advises on sources of support, finds local rehabilitation services and offers a listening ear to those experiencing problems
- Headway publish a range of booklets containing information about aspects of brain injury that will be helpful to those directly affected, plus professionals, employers and members of the public
- Headway promote understanding of brain injury and its effects
- Headway lobby for better support and resources to be made available by statutory health and social care providers
- Headway campaign for measures that will reduce the number of brain injuries
Brain Tumour UK
Brain Tumour UK offers personalised support which is available online, on the phone, by email and through support groups. Our scientific research improves the quality of life for brain tumour patients and identifies better treatments.We raise awareness to change things for the better, for everyone affected by a brain tumour.
Brain Tumour Research
Brain Tumour Research represents the united campaign voice of the Brain Tumour Research group of charities. Established in 2008, the charity Brain Tumour Research was launched specifically to raise substantial funds for brain tumour research and operates as a separate entity to the member charities.
Candlelighters is a charity formed and run by parents of children who have or have had cancer, ex-patients and the medical staff who treat them. Based in Yorkshire, Candlelighters provides essential services and support to children with cancer and their families.
HeadSmart is a project that aims to enhance the awareness of symptoms of brain tumours in children and young people. This website is intended for the public and for health professionals, to help us all work together to improve diagnosis of childhood brain tumours in the UK.
Joseph Foote Trust
Joseph's charity was formed in 2001 after Joseph Foote was diagnosed with a brain tumour aged only 2½. The cancer, after multiple surgeries & treatments, kept returning & eventually claimed his life aged just 9. Within the site you will find more about Joseph and his inspirational battle, about the research team and its progress, and also past, present and future fund raising events.
- Samantha Dickson Brain Tumour Trust
Samantha Dickson Brain Tumour Trust is a charity dedicated to brain tumour research and information and support. We also campaign for earlier diagnosis and better outcomes for everyone with a brain tumour.