Page 1

the little

white book A compendium of brain tumour support resources Edition 1: September 2011


Contents

Introduction

Section 1

Support lines

2

Compendium (noun)

Section 2

Support groups

6

Section 3

Online information

22

1. A collection of concise but detailed information about a particular subject.

Section 4

Networking

28

Section 5

Managing change: Survivorship and bereavement support

30

Section 6

Money

34

2. A collection of things, esp. one systematically gathered. And that’s precisely what this little white book is – a compendium that gives concise, detailed information about the support services available from the brain tumour charity sector. It introduces each service and is systematically gathered! What could be simpler? We know that when diagnosed with a brain tumour, our brain tumour patients, and their carers feel isolated, disempowered and lost. We know that they want to spend their time ‘acting’ on information as well as digesting information. They aren’t sure to whom to turn, when, and for what, and that there is a general feeling of loss of control. We also know that with the myriad of support services available from the charity sector that it can be difficult to work out just what is the best support. We recognise that everyone has different needs and so whether you are a healthcare professional, patient or carer, we have put together this little white book to help you act, and not just digest. We hope it helps you. Helen Director of Services, brainstrust

Note: Data last verified as part of brain tumour hub work programme in March 2011 Introduction

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Section 1

Support lines

Brain tumour support lines are an invaluable service available to patients and carers. They are often available when a clinician isn’t, and the advice can be objective. Some of the helplines are driven by patient and carer experience, meaning the person on the end of the phone may know exactly what you are going through. The phone support you receive may not constitute medical advice, but it will complement it and help you to answer questions you may have.

Support Lines Service Name

Service Provider

Phone contact

Brain and Spine Helpline

The Brain and Spine 0808 808 1000 Foundation

Email

Brief description

helpline@brainandspine. org.uk

The Brain and Spine Helpline is staffed by neuroscience nurses and other health professionals. It covers all neurological conditions, from the fairly common to the very rare, and can offer information and support on any medical or related social and emotional issues of concern. The service answers queries by telephone, letter or email as well as providing an opportunity for people to share their experiences of having a neurological condition on the discussion forum.

Brain Tumour Action Confidential Support Line

Brain Tumour Action

0131 466 3116

Brain Tumour UK Support Line

Brain Tumour UK

0845 4500 386

2

administrator@ braintumouraction.org.uk

Now in its ninth year of service, the Brain Tumour Action Confidential Support Line offers brain tumour support and advice to patients and their family members. The brain tumour support line is run by a trained counsellor. Telephone services offering a one-to-one helpline and shared, group discussions.

Section 1: Support lines

Section 1: Support lines

3


Service Name

Service Provider

Phone contact

Email

Brief description

brainstrust support line

brainstrust

01983 292405

hq@brainstrust.org.uk

With brainstrust’s 24/7, 365 days a year support line, patients, carers and families can pick up the phone, or email and know that they will have an immediate response; an empathetic response which is grounded in reliable source material and one which is personal.

Meningioma UK National Helpline

Meningioma UK

01787 374 084

enquiries@ meningiomauk.org

Founded in 1999 and dedicated to helping everyone affected by Meningioma, Meningioma UK offers free support and clear jargon-free information. They aim to raise awareness of meningioma tumours and advocate faster diagnosis and better care.

Patient Care Line

Samantha Dickson Brain Tumour Trust

0845 130 9733

enquiries@sdbtt.co.uk

A confidential support and information helpline providing support and a listening ear from people who understand your situation. The line is open during normal office hours and from 2pm to 10pm on Wednesdays.

0845 450 0375

helpline@pituitary.org.uk

Information and Support HelpLine open Monday to Friday, 9.00am to 5.00pm.

Pituitary Foundation The Pituitary Support Line Foundation

The Pituitary Foundation Information and Support HelpLine provides a confidential and non-judgemental service to pituitary patients, their carer, families and friends. This service delivers appropriate and clear information in a prompt and empathetic manner to enable callers to make informed choices.

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Section 1: Support lines

Section 1: Support lines

5


Section 2

Support groups

Support groups are a place for people to give and receive both emotional and practical support as well as to exchange information. People with a brain tumour, as well as their friends and families find support groups to be a valuable resource – a place where people can share medical information, get confirmation that their feelings are “normal,” educate others, or just let off steam. When someone is searching for a support group, the single most important thing to remember may be: if the group doesn’t feel right to you or doesn’t match your needs, try a different group. There are many options available.

Support Groups Service name

Service provider

Phone contact

Location

Email address

Brief description

Aberdeen Brain Tumour Support Group

Clan House

01224 647 000

Clan House Caroline Place Aberdeen AB25 2TH

enquiries@clanhouse.org

Emotional support for brain tumour patients, in person and by telephone, including support from professional counsellors, is available from Clan House in Aberdeen.

Andrea’s Gift Brain Tumour Support Group

Andrea’s Gift

01943 870 770

Andrea’s Gift c/o Howard House Wagon Lane Bingley BD16 1WA

andreasgift@btconnect.com

This is a group that meets from 6.30pm to 8.30pm on the first Tuesday of each month. The group currently meets at the Crowne Plaza Hotel, Wellington Street, Leeds LS1 4DL, but please ring Carol on 01943 870770 to confirm the meeting place as the group will sometimes have supper in a local restaurant. Speakers from different areas of care including reiki, aromatherapy and massage through to practical speakers from Social Services, Job Centre and insurance companies come along to the meetings to provide practical information for patients and carers. It is also a good place for carers and patients to simply meet others who are facing similar experiences.

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Section 2: Support groups

Section 2: Support groups

7


Service name

Service provider

Phone contact

Location

Email address

Brief description

Birmingham Brain Tumour UK Support Group

Brain Tumour UK

0121 354 6878

Main Building Old Queen Elizabeth Hospital Edgbaston Birmingham B15 2TH

sue.wreglesworth@ braintumouruk.org.uk

This group meets on the 3rd Monday of the month, 12 noon to 2.00pm.

The Brain Tumour Support Group for Cumbria

The Brain Tumour Support Group for Cumbria

01228 561257 or 01228 514855

Harraby Community Centre Edgehill Road Carlisle CA1 3PP

The Brain Tumour Support and Social Group

Louise Maslin

0788 269 8032

Wessex Social & Sports Club The Club House Newbury Racecourse Berkshire RG14 7PN

The Brain Tumour Support Group for Cumbria runs a support group for brain tumour patients at the Harraby Community Centre in Edgehill Road. lu.ash67@hotmail.co.uk

The Brain Tumour Support and Social Group aims to offer support and information to persons living with Brain Tumours in a relaxed and natural atmosphere. The group meets monthly at Newbury Racecourse for an informal social gathering. They have recently enjoyed a lunch out at the beautiful Essebourn Manor Hotel, a day at Newbury Races in their own pavillion, A make over courtesy of Camp Hopson, Newbury and a lovely meal at ASK restaurant. If you would like any further information please contact them.

Brain Tumour UK Ipswich Support Group

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Brain Tumour UK

0845 4500 386

The group meets on the first Monday of every month from 1.30pm to 3.30pm (please check for any Bank Holiday date changes).

Oak Room 1 Education Centre St Elizabeth Hospice 565 Foxhall Road Ipswich IP3 8LX

Section 2: Support groups

Section 2: Support groups

9


Service name

Service provider

Phone contact

Location

Brain Tumour UK Norfolk Support Group

Brain Tumour UK

0845 4500 386

The Big C Cancer Centre Norfolk & Norwich University Hospital Norwich NR4 7UY

Brain Waves Brain Tumour Support Group

Brain Waves

07973 219271

Helen Webb House 35 Westleigh Road Leicester LE3 0HH

Brainteasers

Brainteasers

020 7188 5918

Dimbleby Cancer Centre 2nd Floor Lambeth Wing St Thomas Hospital Lambeth Palace Road London SE1 7EH

Brainwaves NI

Brainwaves NI

028 9335 3995

68 Cable Road Whitehead BT38 9PZ

British Acoustic Neuroma Association Support Groups

British Acoustic Neuroma Association (BANA)

Freephone number: 0800 652 3143 or 01623 632143

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Section 2: Support groups

Email address

Brief description The group meets on the first Wednesday of every month from 1.30pm to 3.30pm.

audrey.hopwood@ uhl-tr.nhs.uk

Brain Tumour Support group in Leicester. Held on the first Thursday of each month from 2pm to 4pm. A support group for brain tumour patients aged from 16 years to “45ish� meets every month at St Thomas Hospital in Lambeth, just across Westminster Bridge from the House of Commons. The group runs on the first Monday of the month, from 2pm until 4pm.

brainwavesni@hotmail.com

Brainwaves NI is a Northern Ireland based brain tumour charity dedicated to providing brain tumour support and information to those people affected by a brain tumour. If you need any information or want to talk to someone please telephone Kate at 028 9335 3995. There are 3 meetings per year in addition to organised social activities for members. Please check the website for details of meetings @ www.brainwaves-ni.org

admin@bana-uk.com

The British Acoustic Neuroma Association have branches/support groups across the UK, for more details join BANA and access information in the Members section.

Section 2: Support groups

11


Service name

Service provider

Phone contact

Location

Email address

Brief description

Cambridge Brain Tumour Support Group

Ella Pybus

01223 249 220

The Wallace Centre 7 Red Cross Lane Cambridge CB2 2QU

ellapybus@ meningiomauk.org

The group meets on the fourth Friday of every month from 1.30pm to 3.30pm.

Cheltenham Brain Tumour Support Group

Hammer Out

0845 450 1039

Maggie’s Centre College Bath Road Cheltenham GL53 7QB

support.midlands@ hammerout.co.uk

Brain Tumour support group in Cheltenham, run by Hammer Out. Meetings will be from 2.00pm to 3.30pm. Call for more information.

Edinburgh Brain Tumour Support Group

Alice MacGregror

0131 334 3609

Maggie’s Centre Western General Hospital Edinburgh EH4 2XU

Exeter Support Group

Hammer Out

0845 450 1039

Force Cancer Support Cente Corner House Barrack Road Exeter EX2 5DW

support@hammerout.co.uk

A brain tumour support group open to anyone who has been affected by a brain tumour, whether you are a patient, a family member, a friend or a carer. Meetings are held monthly. Call Hammer Out for more information.

Friends of O.S.C.A.R

Friends of O.S.C.A.R

01235 816310

5 Abingdon Road Didcot OX11 9BL

carolharrison@utdsl.com

This group is for children with a brain or spinal tumour and their families. They hold quarterly meetings with various themes which in the past have included an information day, fun day, pantomine and an adolescent weekend.

Glasgow Brain Tumour Support Group

Sheena Muir

0141 942 4475

The PRTC West Glasgow Carers Centre Anniesland Cross 1561 Great Western Road Glasgow G13 1HN

12

Section 2: Support groups

A support group for brain tumour patients is held at Maggie’s Centre at the Western General Hospital in Edinburgh. The groups run every month on the first Tuesday at 7pm.

The group meets on the second Monday of the month from 7pm to 9pm.

Section 2: Support groups

13


Service name

Service provider

Phone contact

Location

Guildford Brain Tumour Support Group

Anne Wittle

01252 834784

The Fountain Centre St Lukes Centre Royal Surrey Hospital Egerton Road Guildford GU2 7XX

Hammer Out and Dorset Healthcare NHS Trust Support Group

Hammer Out and Dorset Healthcare NHS Trust Support Group

0845 450 1039

The Springfield Hotel Grange Road Wareham BH20 5AL

support@hammerout.co.uk

Hammer Out have joined with Dorset Healthcare NHS Trust to establish a brain tumour support group in the Dorset region. The group is open to anyone who has been affected by a brain tumour, whether you are a patient, a family member, a friend or a carer. For meeting dates call Hammer Out on 0845 450 1039.

Hammer Out and Southampton University NHS Trust Brain Tumour Support Group

Hammer Out and Southampton University NHS Trust

0845 450 1039

The Macmillan Centre Southampton General Hospital Tremona Road Southampton SO16 6YD

support@hammerout.co.uk

Hammer Out have joined with Southampton University NHS Trust to establish a brain tumour support group in the Southampton region. The brain tumour support group is open to anyone who has been affected by a brain tumour, whether you are a patient, a family member, a friend or a carer. Meetings are monthly, call Hammer Out for more information.

Hammer Out Drop-in session

Hammer Out

0845 450 1039

Unit One Thornbury Office Park Midland Way Thornbury BS35 2BS

support@hammerout.co.uk

These brain tumour support drop-in sessions are very informal. Please feel free to ask any questions as the session goes along, or if you prefer, just sit and listen and, hopefully, relax. The brain tumour support group is for you so please let Hammer Out know if there is anything you would like included during the year, or if there are things you would prefer not to be included! Light refreshments are available during the sessions, so just drop in and join the group. Call Hammer Out for meeting dates.

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Section 2: Support groups

Email address

Brief description The group meets every second Tuesday from 12 noon to 3pm.

Section 2: Support groups

15


Service name

Service provider

Phone contact

Location

Email address

Brief description

Hartley Wintney Brain Tumour Support Group

Samantha Dickson Brain Tumour Trust

0845 130 9733

Victoria Hall West Green Road Hartley Wintney Hants RG27 8RQ

patientinfo@sdbtt.co.uk

Samantha Dickson Brain Tumour Trust run a support group for brain tumour patients at Victoria Hall in Hartley Wintney. The group runs every 2 months on the second Thursday. 11am until 2pm.

LATCH

LATCH Wales

0292 074 8858

Childrens Hospital for Wales Heath Park Cardiff CF14 4XW

info@latchwales.org

Welsh Childrens Cancer charity that offers a regular brain tumour support group for parents of children with brain tumours, and outings for the children and their siblings.

Liverpool Brain Tumour Support Group

The Walton Centre, Liverpool

0151 529 6100

Patient Advice and Liaison Service The Walton Centre for Neurology and Neurosurgery NHS Trust Lower Lane Fazackerley Liverpool L9 7LJ

tony.murphy@ thewaltoncentre.nhs.uk

A support group for patients diagnosed with a brain tumour takes place every three months at The Walton Centre in Liverpool. Dates vary – contact Tony Murphy at the Walton Centre for more details. Meetings usually run between 7pm and 9pm.

Merseyside and Cheshire Brain Tumour Support Group

Neurosupport

0151 298 2999

The Neurosupport Centre Norton Street Liverpool L3 8LR

info@neurosupport.org.uk

A support group for patients meets regularly at the headquarters of the charitable trust Neurosupport.

Middlesborough Support Group

Brain Tumour Action 01642 854 347

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First Tuesday of each month 6pm to 7.30pm, run by Gill Hendry.

Holistic Cancer Centre, James Cook Hosptial Middlesborough TS4 3BW

Section 2: Support groups

Section 2: Support groups

17


Service name

Service provider

Phone contact

Location

Newcastle Brain Tumour Support Group

Lynn Park, Macmillan NeuroOncology CNS

0191 233 6161 ext. 21060

The Conference Room, Regional Neurosciences Centre, Newcastle General Hospital Westgate Road Newcastle NE4 6BE

Shrewsbury Brain Tumour UK Support Group

Brain Tumour UK

0800 988 2628

Radbrook Community Centre Bank Farm Road Radbrook Green Shrewsbury SY3 6DZ

sue.wreglesworth@ braintumouruk.org.uk

Meetings are held on the second Friday of each month at 1pm. Self-help group for patients, relatives and carers, providing hope and inspiration to local people who are touched by brain tumours.

Southend Hospital Brain Tumour Support Group

Southend Hospital

01702 385113

Southend University Hospital NHS Foundation Trust Prittlewell Chase Westcliff-on-Sea SS0 0RY

gemma.lowdell@southend. nhs.uk

A support group at Southend Hospital runs every 6 weeks for brain tumour patients. Phone Gemma on 01702 385113 for more information.

Staffordshire Brain Tumour Support Group

Hammer Out

0845 450 1039

Please call 0845 450 1039 for venue information

support@hammerout.co.uk

A brain tumour support group, in Staffordshire, offering brain tumour patients the opportunity to meet others who have been affected by a brain tumour in a relaxed, friendly environment.

Support group for low-grade glioma

Emma Townsley and Orla McKee, Neuro-Oncology Clinical Nurse Specialists

0845 155 5000 ext 724122

Resource Room Bloomsbury Healthcare Library Bonham Carter House 52 Gower Street London WC1E 6EB

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Section 2: Support groups

Email address

Brief description A support group for brain tumour patients meets every month at Newcastle General Hospital, held on the last Monday of each month from 2pm until 4pm.

This is for patients, family and friends. The group meet on the first Tuesday of every month from 6pm to 8pm.

Section 2: Support groups

19


Service name

Service provider

Phone contact

Location

Email address

Brief description

Sussex Brain Tumour Support Group

Sussex Brain Tumour Support Group

01403 263719

Mike Brookes 13 Heathway Horsham RH12 5XB

info@sbtsg.org.uk

A support group for brain tumour patients and their families is run by Sussex Brain Tumour Support Group in Haywards Heath. The group runs on the last Thursday of every month from 7pm to 8.30pm.

Thorne Mason Trust Brain Tumour Support

Thorne Mason Trust

01437 766011

Haverfordwest SA62 4DL

thornemasontrust@ googlemail.com

The Thorne Mason Trust is a Pembrokeshire based brain tumour and cancer charity which is run entirely by volunteers. The charity currently holds a monthly brain tumour support session for anyone affected by a brain tumour or cancer including their family, friends and carers on the first Thursday of every month at Crundale Community Centre, Haverfordwest from 10am until 1pm. The support session provides a lending library and information on different types of cancer, a chance to meet with people facing the same issues and problems and free complementary therapies.

Worcestershire Brain Tumour Support Group

Worcestershire Brain Tumour Support Group

07804 820351

Holly Cottage Swansbrook Lane Feckenham Redditch B96 6QB

info@wbtsg.org

The Worcestershire Brain Tumour Support Group (WBTSG) aims to offer information and support to anyone affected in any way by a brain tumour. This will be achieved via regular meetings, telephone/email support and information accessible via their website.

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Section 2: Support groups

Section 2: Support groups

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Section 3

Online information

The Internet is a fantastic resource, putting at our fingertips a wealth of invaluable information. Indeed, thousands of brain tumour patients get health information online. Some of the information is reliable and up to date; some is not. How can you tell the good from the bad? First, consider the source. If you use the Web, look for an “about us” page. Check to see who runs the site: Is it a branch of the government, a university, a health organization, a hospital a charity or a business? Focus on quality. Does the site have an editorial board? Is the information reviewed before it is posted? Be sceptical. Things that sound too good to be true often are. You want current, unbiased information based on up to date research.

Online Information Service URL

Service provider

Brief description

www.bana-uk.com/ index.php?option=com_ content&task=view&id=7&Itemid=7

British Acoustic Neuroma Association (BANA)

The BANA website has information on Acoustic Neuromas, treatment options and treatment issues. If you become a member, you can also access a wide selection of articles covering all aspects of AN management both before, during and after treatment including a selection of Members’ stories. This section also includes a selection of Patient Information papers from several hospitals, as well as an active forum.

www.brainandspine.org.uk

Brain and Spine Foundation

Since its launch, the Brain and Spine Foundation’s website has attracted an increasing number of visitors each month. Some of the most popular sections are: –– A to Z index of neurological topics. –– Discussion forum.

www.brainandspine.org.uk/information/ Brain and Spine Foundation publications/brain_and_spine_booklets/ brain_tumour/index.html

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Section 3: Online information

This online booklet provides information on brain tumours in adults and focuses on primary brain tumours. The booklet describes brain tumours and provides information on common symptoms, tests and investigations, and possible treatments. It also provides information on rehabilitation and returning to everyday activities.

Section 3: Online information

23


Service URL

Service provider

Brief description

www.brainstrust.org.uk

brainstrust

A website with a wealth of information to help you following a brain tumour diagnosis. Sections include, brain tumour support, brain tumour treatment, resources, brain tumour symptoms and diagnosis, patient stories, information for carers, survivorship and more. Developed in conjunction with qualified neuro healthcare professionals.

www.braintumourresearch.org

Brain Tumour Research

The Brain Tumour Research website provides an overview of the different types of brain tumour, brain tumour symptoms and some of the brain tumour treatment options.

www.braintumouruk.org.uk

Brain Tumour UK

This website offers information about the brain, detail about brain tumour symptoms and brain tumour diagnosis, tumour types, treatment information and advice around living with a brain tumour.

www.btbuddies.org.uk

Brain Tumour Buddies

An online resource, containing information and a forum for people affected by high grade brain tumours.

www.bupa.co.uk/individuals/healthinformation/directory/b/brain-tumours

Bupa

Published by Bupa’s health information team, March 2009. This factsheet is for people who have a brain tumour, or who would like information about it. The page offers visitors information on; how cancer develops, about brain tumours, types of primary brain tumour, symptoms of brain tumours, causes of primary brain tumours, diagnosis of brain tumours, treatment of primary brain tumours, help and support, further information and a question and answer section.

www.cancerchat.cancerresearchuk.org

Cancer Research UK

Online forum for sharing of experience and discussion with cancer patients and carers.

www.cancerhelp.org.uk/type/ brain-tumour

Cancer Research UK

This section of CancerHelp UK tells you about brain tumours, including symptoms and causes, tests and treatment, living with brain tumours, and current research.

www.hammerout.co.uk

Hammer Out

Hammer Out’s website offers readers information about brain tumour basics, social implications, getting help, brain tumour symptoms, a medical overview, brain tumour treatments and more.

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Section 3: Online information

Section 3: Online information

25


Service URL

Service provider

Brief description

www.macmillan.org.uk/ Cancerinformation/Cancertypes/ Brain/Braintumours.aspx

Macmillan

An online resource for people affected by a brain tumour. Information includes information on brain tumours, including brain tumour diagnosis, brain tumour treatment, possible side effects and how to get further brain tumour support. The site also has a busy forum where you can ask questions and share experiences.

http://www.meningiomauk.org

Meningioma UK

A website dedicated to supporting anyone interested in or affected by a Meningioma brain tumour.

www.nhs.uk

NHS

NHS information service designed to help people make choices about their healthcare. The website provides sources of medical advice and information on medical conditions and treatments, healthy living, help for carers and NHS services.

www.patient.co.uk

patient.co.uk/EMIS

The aim of patient.co.uk is to provide non-medical people in the UK with good quality information about health and disease. The authors do this by writing evidence based information leaflets on a wide range of medical and health topics. They also review health and illness related websites and link to many of these from the web directory included on the website. UK sites are the primary links in the web directory as they feel that residents in the UK prefer to obtain health information from UK sources. They also suggest some links to selected overseas sites.

www.patient.co.uk/showdoc/ 27000744

Patient UK

This web leaflet aims to give a brief overview of the various types of brain cancer (cancer of the brain) and brain tumours.

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Section 3: Online information

Section 3: Online information

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Section 4

Networking

The essence of networking is to offer experiential sympathy and understanding which can be beyond the scope of health care professionals. Networking also allows patients and carers to meet people from the wider brain tumour community – not just those who typically attend support groups. This can include researchers, fundraisers, charity workers and interested parties. It is important to be aware that whilst networking events can be a source of excellent information, they are much more ‘free-flowing’ than facilitated support groups. The discussion is not controlled, and opinions can be subjective, and may not constitute medical advice.

Networking Service name

Service provider

Contact number

Address

Email address

Brief description

brainstrust meet ups

brainstrust

01983 292405

4 Yvery Court Castle Road Cowes Isle of Wight PO31 7QG

hq@brainstrust.org.uk

An opportunity for people from the brain tumour community to get together, have fun, and if they want share experiences and advice with peers. These events are hosted nationally and are coordiniated online through www.meetup.com/brainstrust

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Section 4: Networking

Section 4: Networking

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Section 5

Managing change: Survivorship and bereavement support

Cancer survivors can face all kinds of challenges as a result of their diagnosis and treatment, from physical, emotional, social, spiritual, through to financial challenges. Getting back to normal routines can be challenging. There is help at hand to navigate this part of the brain tumour journey. Unfortunately not everyone survives having a brain tumour. When a person you look after dies, you may be not only losing a loved one, but as a carer you may be losing your sense of purpose when your caring role ends. It may not feel like it, but there are many people who you can turn to for help and support, including health and social services professionals who are becoming more aware of this impact. Bereavement care and support is available to all carers, family and close friends from a variety of organisations. Family members and friends can also provide emotional support.

Managing Change – bereavement and survivorship support Service name

Service provider

Contact number

Address

Email address

Brief description

brainstrust bereavement support

brainstrust

01983 292405

4 Yvery Court Castle Road Cowes Isle of Wight PO31 7QG

hq@brainstrust.org.uk

We, at brainstrust, understand only too well what it feels like to be bereaved. We also know that good, supportive care of the dying, and of those who have been bereaved, leads to better outcomes. Treating death as a part of life is difficult, but it can help alleviate some of the fear and confusion associated with it. Dealing with death must be done within your own beliefs and those around you. And we can help you do this. Just pick up the phone – or email.

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Section 5: Managing change: Survivorship and bereavement support

Section 5: Managing change: Survivorship and bereavement support

31


Service name

Service provider

Contact number

Address

Email address

Brief description

brainstrust survivorship support

brainstrust

01983 292405

4 Yvery Court Castle Road Cowes Isle of Wight PO31 7QG

hq@brainstrust.org.uk

People do survive cancer. All the time. And people can survive brain cancer. There are some things you can do to live the life you want. You have to remember that cancer changes survivors, and their carers, forever. Getting back to “normal” routines can be a challenge after waging such a war. We are lucky to have highly trained coaches at brainstrust who can help you in this phase of the journey – whether you have been at the helm, or a passenger. Whatever the challenges you are facing, we believe that you have the inner resources to deal with them; you just need to find them. And we can help you with this.

Cruse Bereavement Care

Cruse Bereavement Care

08444 779400

Cruse Bereavement Care, PO Box 800 Richmond Surrey TW9 1RG

info@cruse.org.uk

Support and advice for all bereaved people; local branches offer one to one and group support in most cases; website with information; daily helpline; leaflets and books.

HOBS

Hammer Out

01454 414 355

Unit One Thornbury Office Park Midland Way Thornbury BS35 2BS

hobs@hammerout.co.uk

HOBS organises regular events so that people who have lost a loved one to a brain tumour can get together to share thoughts and feelings, and hopefully a smile or two. HOBS usually meets every four to six weeks, for a coffee and light lunch, at a hotel or pub, where there is the opportunity for conversation with others with similar experiences. Home visits, or an individual meeting, are available initially, providing the opportunity to discuss organisations offering bereavement counselling, or to look at Hammer Out’s range of books, which are available to borrow. Please contact Hammer Out for further information, or to be added to the HOBS mailing list.

RD4U

Cruse Bereavement Care

0808 8081677

Cruse Bereavement Care, PO Box 800 Richmond Surrey TW9 1RG

helpline@rd4u.org.uk

A special website for bereaved children and young people to share, express and exchange experiences; publications; a freephone helpline; access to services from Cruse Bereavement Care.

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Section 5: Managing change: Survivorship and bereavement support

Section 5: Managing change: Survivorship and bereavement support

33


Section 6

Money

As if you haven’t got enough to worry about. Having a brain tumour will, at some point, impact on you financially as well as physically and emotionally. The same guiding principle applies – look this tiger in the eye. The more prepared you are, the better you will be prepared if you need additional financial support. Much better to be proactive, than reactive. The good news is that there is a wealth (pardon the pun) of support out there.

Money – signposts to financial support Service

Provider

Contact number

Assistance with health care costs

UK Government

0845 8501166

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Address

Email address and website Brief description Most National Health Service (NHS) treatment is free but there can be charges for some things. You may be able to get help with NHS health costs if for example you’re on a low income. You may be able to get help with health costs like: –– NHS prescription charges –– NHS dental treatment, including check-ups –– sight tests –– vouchers towards the cost of glasses or contact lenses –– travel costs to and from hospital for NHS treatment under the care of a consultant or on referral by a doctor or dentist –– wigs and fabric supports, such as abdominal and spinal supports

Section 6: Money

Section 6: Money

35


Service

Provider

Contact number

CLIC Sargent Care Grants

CLIC Sargent

0208 752 2800

www.clicsargent.org.uk/ Many families soon find that cancer brings financial Whatwedo/Financialsupport strain too. Unpaid leave from work, after school care for siblings and travel are the most common costs. That’s why CLIC Sargent offer grants of £170 to help with immediate financial needs. Exceptional Grants, Community Support Grants and Compassionate Grants are also available to some. Any family with a child or young person (aged 24 or under) who is receiving treatment for cancer or palliative care is welcome to apply.

The Denny Care and Relief Fund

Brain Tumour UK

0845 4500 386

www.braintumouruk.org.uk/ Set up in memory of a brain tumour patient, the financial-support Denny Care & Relief Fund is funded and administered by Brain Tumour UK. It provides non means-tested grants of up to £500 to individuals with a brain tumour.

Disability Living Allowance

UK Government

Disabled Persons Railcard

36

National Rail

0845 605 0525

Address

Email address and website Brief description

Disability Living Allowance Unit Warbreck House Warbreck Hill Blackpool FY2 0YE

DCPU.Customer-Services@ dwp.gsi.gov.uk

Disabled Persons Railcard Office PO Box 11631 Laurencekirk AB30 9AA

disability@atoc.org

Section 6: Money

www.direct.gov.uk

http://www.disabled persons-railcard.co.uk

Section 6: Money

The Disability Living Allowance (DLA) is a tax-free benefit for children and adults to help with extra costs you may have because you are disabled. This includes a brain tumour diagnosis and the support you might need because you have a brain tumour. It is not based on your diagnosis but the needs arising from it. For example, if you need someone to help look after you because you have memory problems, or your mobility is affected. If you have a disability that makes travelling by train difficult you might qualify for the Disabled Persons Railcard. The Disabled Persons Railcard allows you to get 1/3 off most rail fares throughout Great Britain. If you’re travelling with an adult companion they also can get 1/3 off their rail fare. You might qualify if you: have a visual impairment, a hearing impairment, have epilepsy or are in receipt of a disability-related benefit.

37


Service

Provider

Contact number

Healthcare Travel Costs Scheme

UK Government

0845 850 1166

www.direct.gov.uk

You may be able to get financial help from the Healthcare Travel Costs Scheme if you’re on a low income, need NHS treatment at a hospital, other NHS centre or private clinic and have been referred by an NHS hospital consultant, doctor or dentist.

Incapacity Benefit

UK Government

0800 055 6688

www.direct.gov.uk

If you can’t work because of illness or disability you may be able to get Incapacity Benefit (IB), a weekly payment for people under State Pension age – currently 60 for women and 65 for men.

Independence at Home

Independence at Home

020 8427 7929

www.independenceathome. org.uk

If you have a long-term illness or a disability and need help towards the cost of adaptations, equipment or other things to help you to manage at home, and which are not available from public funds, then Independence at Home may be able to help. You will need to find someone from the Health or Social Care Team who has been professionally involved with your care, to refer you to Independence at Home. The most usual referrers are social workers; occupational therapists; specialist nurses; disability and health advice workers; or key workers from other major charities. There may be other professional people who are willing to act as your referrer. Independence at Home are happy to talk to you on the phone if you need advice on who to choose.

Information about statutory sick pay

UK Government

www.direct.gov.uk

If you’re an employee and unable to work because you’re ill you may be able to get Statutory Sick Pay. It is paid by your employer and can be paid for up to 28 weeks.

38

Address

Independence at Home 4th Floor Congress House 14 Lyon Road Harrow

Section 6: Money

Email address and website Brief description

Section 6: Money

39


My notes

40

My notes


Whilst this book has been funded and published by brainstrust, every step has been taken to ensure that all the services represented in this publication are done so equally, with no preferential treatment of any particular service or recommendation that any service is better than another. This information is also available online at www.braintumourhub.org.uk The information within the little white book is due for review in September 2012. If there are any additional services that you would like to see in here, or if any information is found to be out of date, please call brainstrust on 01983 292405, or email meg@brainstrust.org.uk The little white book, edition 1, published by brainstrust September 2011, due for review September 2012. Š brainstrust 2011

the Little White Book  

A compendium of brain tumour support resources for brain tumour patients and their carers.

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