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| Support |
No-one expects to be given the devastating news that their child has a brain tumour or cancer. On diagnosis you may or may not be given information on some organisations that can offer you support. There are several charities, organisations and websites which can offer support..it is just knowing where to find them. This page has the details of reliable sources of information and support.
Click the links below to go straight to that section
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| Local Support |
In this section are details of organisations in East Anglia which can help those who have a family member living with cancer. They can provide information and support either emotionally or financially.
| gaps:line |
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8pm - 10pm 7 days a week
0845 1-2-1 4277
View Website
a listening ear for parents and families of children with leukaemeia and cancer...
the gaps:line is a telephone support line staffed by volunteer parents who have had first-hand experience of caring for a child with leukaemia or cancer
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| THE MIRIAM CHARITABLE TRUST |
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PO Box 53, Lowestoft, NR32 4XE
View Website
Funds are available for a wide variety of practical needs for 18-35 year olds by contacting the above address
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| SCY - SUPPORT FOR FAMILIES WITH CANCER IN YOUNGSTERS |
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Mary Allen Tel: 01728 746 511
View Website
A support group for parents of children with cancer. They hold meetings on the 3rd Wednesday of the month at the Community Resource Unit, Humber Doucy lane, Ipswich between 7.30 and 9.30pm. As well as talks, these meetings offer a chance to share experiences and support other families. Telephone support is also available - call Mary on 01728 746 511.
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| THE BIG C APPEAL |
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10a Castle Meadow, Norwich, Norfolk, NR1 3DE
01603 619 900
View Website
Information and advice
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| CANCER CAMPAIGN IN SUFFOLK (CCIS APPEAL) |
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PO Box 135
Felixstowe, Suffolk, IP11 9WX
View Website
A good, friendly source of information.
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| CHILDHOOD CANCER ORGANISATION FOR PARENTS AND RELATIVES SUPPORT (COPARS) |
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5 Hauxton Road, Trumpington, Cambridge, CB22NJ
Jane Lavien
01223 570 512
View Website
An organisation linked to Addenbrookes hospital, providing a good support service at the hospital as well as organising social events and producing a newsletter 3 times a year, check out their new website
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| CRUSE BEREAVEMENT CARE |
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Gt. Yarmouth 01493 440 489
Lowestoft, Waveney, N.Suffolk 01502 722234
View Website
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| WEST SUFFOLK & THETFORD SUPPORT GROUP |
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Eileen Borley 01284 729 007
View Website
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| DIAL UK - DISABILITY INFORMATION & ADVICE LINE
DIAL LOWESTOFT & WAVENEY |
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161 Rotterdam Road, Lowestoft
01502 511 333
View Website
Information and advice on all aspects of living with a disability ie; benefits, community care, equipment etc. Also provide a wheelchair loan service.
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| THE MENINGIOMA ASSOCIATION UK |
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53 Pine Grove, Brookmans Park,
Hatfield, Herts AL9 7BL
Ella Pybus
01787 374 084
View Website
Formed by Ella Pybus and Carolien Batt who have both been affected by meningioma tumours, this organisation provides help and information in the eastern Counties for people diagnosed with meningioma tumours of the brain or spine.
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| Useful Organisations |
After your child has been diagnosed you will find you meet several new people including social workers, outreach nurses, radiologists etc. It is all rather overwhelming, not only to have been told that your child has cancer but to then be faced with all these 'strangers'.
These organisations are there to give your child and your family support and although at the time you may not need the help it is worth knowing that it is there. Here a few of the organisations which are there to help.
They can provide-
- Financial support
- Emotional support
- Respite care/ Crisis breaks
| CLIC CANCER AND LEUKAEMIA IN CHILDREN |
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Emma-Chris Way, Abbey Wood, Bristol, BS34 7JU
Your contact for East Anglia is 01359 231 072
0845 301 0031
View Website
The website has all the information about the services that CLIC provide which include — Homes from Home— Specialist Nurses and Play Specialists — Care Grants — Crisis Breaks —or talk to your ward nurse. |
| SARGENT CANCER CARE FOR CHILDREN |
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Griffen House, 161 Hammersmith Road, London, W6 8SG
Your contact for East Anglia is 01728 748 165
020 8752 2800
View Website
Provide emotional, practical and financial support to families in need. Families are also offered short breaks at The Malcolm Sargent House, Prestwick. Young people between 13 and 21 affected by cancer are offered holidays at the Malcolm Sargent House, Bexley, London. |
| THE SICK CHILDRENS TRUST |
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Floor 5, 39-40 Eagle Street, London, WC1R 4TJ
The house based at Addenbrookes, Cambridge is Acorn House and you can speak to the Manager Linda Walker on - 01223 586806
020 7404 3329
View Website
Supports families while their child is receiving treatment by providing purpose built accommodation near to the hospital. More information is on the website. |
| ROUND TABLE CHILDRENS WISH |
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857 Wimbourne Road, Bournemouth, Dorset, BH9 2BQ
01202 514515
View Website
Grants wishes to children with life-threatening illnesses |
| QUIDENHAM |
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East Anglia Childrens Hospice
Quidenham, Norwich, NR16 2PH
01953 888 603
View Website
Caring in every way for life- threatened children and their families. A 'far-cry' from the stereo-type of a hospice. Anyone can refer a family to Quidenham. Give them a ring or see the website to find out more about the help and support they can provide. |
| TRAVEL INSURANCE |
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View Website
Will insure those diagnosed with a brain tumour, if you
- Have finished radiotherapy or chemotherapy at least 3 months previous and
- Are not currently having treatment and
- Are not awaiting any test results and
- Do not have a terminal prognosis.
All Clear 0870 7779339
There a few travel agents who specialise in travel insurance for those with a terminal or life treatening illness...
Venturesure 0800 181532
Will insure those diagnosed with a brain tumour, if you
- Have finished radiotherapy or chemotherapy at least 3 months previous and
- Are not currently having treatment and
- Are not awaiting any test results and
- Do not have a terminal prognosis.
All Clear 0870 7779339
Will insure those with any medical condition as long as prognosis is at least 6 months at date of return from travel to UK .
JD Consultants 01689 859102
Ask for Kathy Jefferies or Jackie Jackson
Each application is assessed on an individual basis and advice given on a range of insurance cover options. It may be necessary to pass you to an insurers screening line for clearance. Not relevant for those with less than 6 months prognosis. This information was correct as of 15 th March 2004. If any information on this fact sheet changes or a company you have used is not included, do contact Brain Tumour Foundation on tel/fax 020 8336 2020 or email btf.uk@virgin.net to update |
| ACT - PROMOTING PAEDIATRIC PALLIATIVE CARE |
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Orchard House, Orchard lane, Bristol BS1 5DT
Information 0117 922 1556
View Website
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| CRUSE BEREAVEMENT CARE |
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Gt. Yarmouth 01493 440 489
Lowestoft, Waveney, N.Suffolk 01502 722234
View Website
Part of cruse is dedicated to teenagers www.rd4u.org.uk
An excellent interactive site for teenagers who have lost someone. |
| DIAL UK - DISABILITY INFORMATION & ADVICE LINE |
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St. Catherine's, Tickhill Road
Doncaster, South Yorkshire, DN4 8QN
01302 310 123
View Website
Provides a network of information and advice to disabled people om all aspects of disability ie; welfare benefits, community care, equipment, mobility etc |
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| Informative Websites |
When you are given the devastating news that your child has a brain tumour or cancer the immediate feelings are of disbelief, anger and devastation. You are given the basic facts by the consultant, which are hard to digest in this traumatic situation.
It is not until a few days later or when you get home that reality starts to hit you and the questions begin to appear
- What caused this? Could it have been prevented?
- Will he be impaired by the tumour and/or the treatment
- Is she going to die?
- How are we going to get through this?
The information is out there but is not readily available. Your consultant should be the best person to ask but is not always on hand when the question comes into your head. Writing a list and taking it with you to your next consultation is a good idea as is taking your partner or a friend.
The Internet is an unlimited source of information from all over the world but it is very time consuming to trawl the websites searching for something that provides relevant and concise information.
The Ellie Savage Memorial Trust
provides links to websites that
- Are informative and easy to understand
- Can provide support and advice
| BRAIN TUMOUR FOUNDATION |
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PO Box 123, Tewkesbury GL20 7YT
Gillian Thistlewood
01684 290439
View Website
Great website, easy to navigate, good info |
| BRAIN TUMOUR UK |
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6 Queen Street, Whitehaven, Cumbria, CA28 7BB
Jane Stephens
0845 4500 386
View Website
Provides information and support by telephone staffed by trained volunteers who have either had experience of a brain tumour or are health professionals, you can also email them via the website. |
| BRAIN AND SPINE FOUNDATION |
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7 Winchester House,Kennington Park, London SW9 6EJ
Mon-Fri 9am-1pm Wed 10am-6pm
0808 808 1000
View Website
Useful and informative the website where you can also email your questions. Copies of the Brain and Spine Information Booklets can be obtained via the help-line or down loaded from the website. Excellent help-line staffed by neuro-nurses who will return all messages left on the answer-phone the next day. |
| BRAIN TUMOUR ACTION |
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25 Ann Street, Edinburgh, EH4 1PL
David Brandon
01506 436 164
View Website
Good basic information, lots of it and it’s easy to understand — leaflets can be down-loaded free. Also provide a telephone help-line staffed by Neuro-Oncology nurses and trained counsellors. |
| LEUKAEMIA RESEARCH FOUNDATION |
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43 Great Ormond Street, London WC 1N 3JJ
020 7405 0101
View Website
Plenty of information on different types of leukaemia, leaflets are also available. |
| CANCER BACUP |
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2 Bath Place; Rivvington Street, London
Mon-Fri 9am — 7pm
0808 800 1234
View Website
Again, clear concise information on the website. Also provide a free-phone helpline. Excellent information booklets are available on specific conditions by telephoning 020 7696 9003 |
| SQUIRRELS TALES |
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View Website
An American site with a lot a links to other good information sites, especially sites aimed at children and teenagers. |
| CAPTAIN CHEMO |
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View Website
The Royal Marsden is the UK’s pioneering cancer centre. This website was set up by a young man who at the time was suffering from cancer. Capt Chemo is a cartoon strip that is fun and at the same time explains a lot of the procedures that cancer patients endure; it is aimed primarily at teenagers |
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