the current services offered by YBTC Our support is for anyone impacted by a primary brain tumour across Yorkshire. This includes: •
Patients (adults and children) diagnosed with a high or low grade primary brain tumour
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Carers including parents, partners, relatives or friends
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Family members who are living with, or have sadly lost, a loved one
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Children who are affected by a family diagnosis
@YorkshireBTC www.yorksbtc.org.uk | Tel: 0113 511 8111 support@yorksbtc.org.uk YBTC, 31 Otley Road, Headingley, Leeds, LS6 3AA Registered Charity No: 1095931
financial support patient grants
bridging grants
We provide grants up to £500 for children and adults to:
We provide one off bridging grants of £200 for children aged up to 16 years who are a patient on Ward L52 at Leeds Children’s Hospital and are/or will be receiving treatment or under investigation for a suspected brain tumour.
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Reduce financial hardship Reduce isolation or social exclusion Make a special wish come true
Applications can only be made again after 12 months has passed.
The grants help towards the associated costs of having a child in hospital e.g. parking, food and drink, or other childcare costs.
benefits and welfare We have developed relationships with professionals e.g. a Macmillan Social Worker in Leeds to provide one-to-one specialist advice and support through signposting to services. We have also developed links across the region so people can access help in their own locality. We run welfare/benefits themed support groups and information sessions.
form completion We support individuals in completing PIP applications and other forms when needed if other support is not available. We are able to signpost to local services who can undertake this in some areas where it is available.
access to emotional support (telephone, email & online) out of hours support Our support line (0113 511 8111) is open 9am to 10pm seven days a week. During office hours the line is answered by a member of our support team. After 5pm and on weekends it is answered by a trained volunteer. We supervise the volunteers and they are able to access support if a safeguarding issue arose out of working hours.
telephone and email support We support people through our telephone and email clinics. Caseloads enable us to monitor and keep in touch with individuals and families as needed, e.g. checking in before and after a scan, on the anniversary of a death, after surgery or to offer regular emotional support at a particularly difficult time. We use these clinics to understand their needs and signpost to other YBTC services and/or external support too.
social media We have some private groups on social media (e.g. Facebook) and this enables people to come together to offer advice and support to each other. We also respond to online messages received across a number of platforms including Facebook LinkedIn Twitter and Instagram.
online chat We have an online chat facility on the charity’s website that enables individuals to contact us easily, without the need to find our contact details. We also have WhatsApp messaging available.
psychological support counselling
wellness walks
Our counselling service gives access to a professional over six sessions who can assist with developing coping strategies. Sessions can be undertaken in person (currently in Wakefield, Headingley, Leeds, Middleton Leeds, Kirklees Calderdale, or Drighlington) or via WhatsApp call, Zoom or telephone.
We offer one-to-one well-being walks for adult patients, carers or family members as an alternative to counselling. These are provided through a partnership with Good Footing who are trained to help build positivity and resilience to the magic of walking. Walks can help reduce the feeling of loneliness and isolation, build confidence, boost motivation and mental well-being as well as improve mood and positivity.
We have adult, child and young adult specialist counsellors available.
hypnotherapy We may offer hypnotherapy to adults as part of the counselling sessions. This is undertaken by one of our professional counsellors trained in hypnotherapy for clinical settings. We don’t offer this as a standalone therapy.
online resources Our website has a range of resources which include:
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Mindfulness meditation Hypnotherapy Support managing anxiety Self-care guides Video and audio tools
books We send books to individuals or families that may help them come to terms with their specific situation, e.g. “Toby the Teapot has a broken lid” is a great resource that explains in a simple way about a child’s dad having a brain tumour. We have a range of different ages (and adults too) to aid understanding and start open discussion.
support groups & peer support support meet-ups
drop-in cafes
We are now holding regular support meet-ups on a monthly basis as below:
We are now holding monthly informal drop-in cafes as below:
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Online, first Tuesday each month, 6:30-8pm via Zoom. Leeds, second Monday each month, 1-2:30pm at Maggie’s Centre, St James’ Sheffield, TBC (from Oct) at Weston Park Cancer Charity
get-togethers
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Wakefield, fourth Thursday each month, 10:30am - 12:30pm at Create Cafe Leeds, second Saturday each month, 10am - 12noon at the Loft Coffee Shop, Farsley, Leeds
group walks
We are launching monthly gettogethers in October. These will take place in Kirklees and Bradford initially and will be peer led by a trained volunteer. The idea behind this is to offer something more social for those who no longer require our professional support but will benefit from continued support networks.
We hold group well-being walks in beauty spots across Yorkshire on a monthly basis, offering innovative, engaging and transformative walking experiences. The walks are low-level, lasting 1-1.5 hours. A member of the YBTC team is available for those who wish to wait for their loved one, or who don’t feel able to walk but are attending with a loved one, offering additional drop-in cafes.
family events
check in and chat
We offer a range of family events, with the aim of holding something every season to bring people together to build peer support networks and meet others, share experiences and ways of coping in an informal setting. We will develop these further with input from our Patient Advisory Group.
We are running a peer support scheme which buddies up people going through a difficult time with a trained volunteer who has been in a similar situation and just “gets it,” offering conversation, compassion and companionship. Our volunteers are supervised closely by a member of the support team.
bereavement support groups We run an offline, fortnightly, bereavement support group that is peer led by a trained volunteer who has had her own experience of caring for a spouse with a brain tumour and subsequent bereavement. Through the summer, a series of monthly garden get togethers are held to bring attendees together in person. All other counselling support and family events are also available.
psychological •
Access to our support line.
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Specialist bereavement counselling and hypnotherapy.
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Continued telephone and email contact with the support team as required.
resources •
Online bereavement guides including how to support a bereaved person, helping children and living loss, or anticipatory loss.
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Info guides e.g. bereavement support benefits and single occupancy (council tax/water/utilities).
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Selection of books to support understanding and coping for adults and children.
supporting clinical teams We offer support directly to the CNS Teams in the region in the three key treatment hospitals, for example supporting away days or education days and offering clinical supervision. We are also able to provide patient folders, leaflets, business cards, banners, leaflet holders and other promotional items as required.
L52 We offer support to the Children’s Neurosurgery Ward. L52 at Leeds Children’s Hospital. This is as a carry on from the work previously undertaken by Will’s Way. For all low-grade paediatric patients we are now referred to by the team as part of the agreed care pathway for ongoing/follow up support.
L52 We work closely with the clinical and play teams to offer:
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Bridging grants and support on the ward to help completing forms.
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Craft and play items as requested by play therapists.
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Pizza and movie nights.
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New furniture or decoration e.g. Christmas lights.
patient advisory group We have an active Patient Advisory Group who represent the views and experiences of people affected by a brain tumour. They get involved in a number of ways including:
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Giving feedback on proposed clinical trials and/or designs for researchers Online surveys or polls Focus groups Reading new patient information and giving feedback How YBTC develop our services and their ideas
This scheme enables those we support to feel that they are giving back to help improve the experience for people affected by a brain tumour in the future. Our Patient Advisory Group enables us to further support researchers when undertaking Patient and Public Involvement (PPI) groups.
to find out more about our different forms of support go to www.yorksbtc.org.uk/Loving-Support/Support
how to access our support One of your medical team, for example your Clinical Nurse Specialist, Consultant, Occupational Therapist, Consultant or GP may send a referral to us, or you can self-refer by contacting us directly:
Email: support@yorksbtc.org.uk Tel:
0113 511 8111
Web: www.yorksbtc.org.uk Visit: YBTC, 31 Otley Road,
Headingley, Leeds, LS6 3AA @YorkshireBTC
www.yorksbtc.org.uk | Tel: 0113 511 8111 support@yorksbtc.org.uk YBTC, 31 Otley Road, Headingley, Leeds, LS6 3AA Registered Charity No: 1095931
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