Emotional Support

Emotional Support
This is an emotional time for you, your child and all your family and you need support networks around you to help you adapt to the changes that are occurring in your life. For most of us this is an unexpected journey and coping with it can be difficult.

Family are important and if you can support each other that’s fantastic. Its worth remembering though that everyone will deal with things differently. Some people like to talk, cry and share their emotions, some don’t and find it very hard to show their feelings. Trying to deal with the practical day-to-day issues of your child’s illness as well as work,partners,siblings,shopping,cooking etc etc is tough. Don’t be afraid to ask for help from your friends, family and your doctor. This is one of the main purposes of this support group, to help you feel less isolated and alone, we are just an email away and a chat with someone who understands can often help. See our Contact Us page

Local CommunityMental Health Services

If you have not been referred to your local mental health support network, ask if you can be. Primary mental health care workers can support your child and you through the difficult challenges ahead. They provide a confidential service, allowing your child to explore their feelings, anger and sorrow and joy in a professional environment. They will use a variety of different mediums such as play, toys, role play, art work etc to help your child explore their feelings, fears and worries. They represent a safe non-judgemental place where you and your child can simply be yourselves.

Primary Mental Health is a short term support system if you and child require longer term support you should ask to be referred to the Young Persons and Adult Mental Health services in your local authority.

Counselling

Counselling Directory is a comprehensive database of UK counsellors, with information on their training, experience and areas of counselling covered.

www.counselling-directory.org.uk

New relationships guide
Research shows that parents of disabled children are more likely to experience relationship difficulties.

With an endless array of doctors’ appointments, juggling work and caring commitments and the need to book alternative care months in advance there is little time for making a partner feel special.

Contact a Family and One Plus One, a charity dedicated to strengthening couple and family relationships have produced a guide – Relationships and caring for a disabled child – which provides information and ideas about looking after couple and family relationships when faced with these challenges.

To order a free copy of the Relationships Guide telephone the Contact a Family freephone helpline 0808 808 3555 or Web: http://www.cafamily.org.uk/relationships.html

New early support website
Early Support is the government programme for achieving better
co-ordinated, family focused services for young disabled children and their families. The 'for families' section explains what
Early Support is about to parents and carers and helps those visiting the site for the first time to find their way around.
Well worth a visit

http://www.earlysupport.org.uk

See our 'Alternative Therapy' page for details of other ideas to help with emotional stress.

Other Supportive Agencies
The Sick Children's Trust
80 Ashfield Street, London E1 2BJ.
Sick children need the support and love that only their family can give more than ever when they are seriously ill. Unfortunately seriously ill children often have to travel many miles from home in order to receive the necessary medical treatment. The Sick Children's Trust is a national charity providing 'Home from Home' accommodation for the families of sick children at specialist hospitals for paediatric care.The Sick Children's Trust provides good quality, safe and secure accommodation for the whole family - free of charge - at some of the UK's finest paediatric centres:
Great Ormond Street Hospital in London - Rainbow House and Guilford Street House
St James's University Hospital in Leeds - Eckersley House
The Royal Victoria Infirmary in Newcastle upon Tyne - Crawford House
Addenbrooke's Hospital in Cambridge - Acorn House
Sheffield Children's Hospital - Treetop House
Royal London Hospital - Stevenson House
You can email them at info@sickchidrenstrust.org

www.bpold.co.uk

BPOLD aims to establish a registry of nine rare lung diseases in children in the UK. The registry will provide epidemiological data on the prevalence and incidence of individual rare lung diseases and inform research projects which will increase our understanding of these diseases and ultimately improve treatment strategies for these children. They have a Support Forum, aimed at establishing self-help groups for patients and their families/carers.

Breathtakers would like to encourage all familes who are affected with OB to take advantage of the great BPOLD forum to enable them to interact with each other. Registration is simple and its great to share your experiences with others who can understand what you are going through. The more interaction we have with each other the more the profile of OB is raised with the medical profession, which in turn encourages the allocation of resources towards its understanding. Please register and support this forum. Its yet another way of getting our voice heard so the more families who register the better.

Starlight Children's Foundation
Macmillan House, Paddington Station, London W2 1HD.
The Starlight Children's Foundation grants wishes to children between the ages of 4 and 18 who are critically, chronically and terminally ill. Wishes fall into four broad categories: celebrity, experience, gift and travel wishes. Wishes may vary from being a magic fairy to meeting the Prime Minister. Wish referrals are made by writing to the Starlight Office and once forms have been completed, the wish is allocated to a trained volunteer. Starlight pays for the entire wish and each wish involves the child's parents and brothers and sisters under 18 in order to strengthen important family bonds. We rely on donations from individuals, companies and trusts as well as fundraising activities for support. If you would like to help or refer a wish child, please write to us at the above address.

FREE HOLIDAYS FOR CHILDREN WITH LIFE LIMITING ILLNESSES.

Camp Quality UK is a charity that takes children with a potential
life limiting illness on holidays, giving them the
chance to be themselves and to have fun.

The holiday programme is structured to cater for all abilities and
disabilities and there is a medical team on hand. Every holiday is
funded entirely by Camp Quality UK and is provided free of charge to
each child.

For more information visit Web: http://www.campquality.org.uk .
If you have any ideas or experiences that have helped you cope please let us know
contact. lynne@breathtakers.co.uk

Breathtakers

Supporting sufferers of Obliterative Bronchiolitis and other Rare Lung Disease