Since its launch in 2006, the ASBAH helpline has handled thousands of enquiries and continues to provide a gateway to support on all aspects of spina bifida and hydrocephalus to parents, carers, individuals and professionals. No matter how small the query may seem, the helpline is there to provide access to professional advice.
The helpline is staffed from Monday to Friday 10am – 4pm: messages can be left out of hours on our voicemail, and we will endeavour to return your call within 24 working hours. Calls are recorded for training purposes.
For the price of a local call you can get in touch by phoning 0845 450 7755
0845 calls from BT landlines will cost up to 4p per minute with a call set-up fee of up to 8p. Many callers on certain tariffs will pay less than this (e.g. BT now includes 0845 number calls in their BT Together allowances for free 'anytime' calls). Calls from other landlines and mobiles will vary. Check with your service provider for more information. (Informatiion correct as at March 2009)
You can also email helpline@asbah.org
Alternatively you can send a letter to:
42 Park Road
Peterborough
PE1 2UQ
Or
Fill in the online request for the helpline to contact you.
The Helpline is a member of the Telephone Helpline Association.
Helpline Manager, Linda Lewis, said: “We receive a real mix of enquiries; from parents and family members to health professionals and outside agencies calling on behalf of their clients. Most people contact us by telephone but the number of emails has doubled since last year.
“It’s important to remember the helpline can provide callers with access to a range of other services provided by ASBAH.
“We can arrange contact with regional advisers in most parts of the country. Being able to provide support and information at a local level is very important and is particularly helpful when callers require assistance in completing their benefits forms or are looking for local social groups and events.
“Other sources of support and information can be provided by our specialist advisers who can assist you with your medical and educational enquiries”
Whom does the helpline help?
Helping... young adults
A young man who has spina bifida and is a wheelchair user called to ask for the best way of getting across London using the public transport system. He was keen to make the arrangements himself to prove his independence to his mum. The helpline directed him to suitable websites which would give him the information he needed.
Helping... students
One young lady who is a student nurse sent in a £5 donation to say thank you for the literature about spina bifida and hydrocephalus the helpline had sent out to her. ASBAH believes it is important to provide support to students to capture their interest in these disabilities.
Helping... education professionals
A teacher called in for advice about what sporting activities a child who has a shunt can safely get involved in and the team were able to provide her with the latest guidelines to enable her pupil to get the most out of school life.
Helping... midwives and GPs
The helpline receives many queries from midwives and GPs who want to check up on the latest information about folic acid dosages or to request more information about ASBAH’s campaign to fortify UK flour with folic acid.
Helping... care home staff
A newly appointed manager of a nursing home called and asked for information leaflets about spina bifida because one of her residents had the condition. Helpline staff were delighted that she had taken the initiative to find out more so her team could provide a good level of care.
Helping... parents
One anxious parent called in because they were worried their child may have a blocked shunt as she was lethargic and vomiting. The parent was connected to a specialist medical adviser to discuss the symptoms further and was told to take the child to hospital straight away. Several days later the parent rang back to let ASBAH know that within an hour of being at the hospital, her daughter underwent a successful emergency shunt operation.
Helping... with NPH
One lady called in because she was worried about her husband who had been diagnosed with Normal Pressure Hydrocephalus (NPH). She was sent information leaflets and a copy of ASBAH’s NPH CD Rom to help answer some of her many questions.
Helping... adults
Calls from adults who have been told they have spina bifida occulta are not uncommon. Linda said “We recently received a call from a man in his 40s, who had been involved in a car accident. An x-ray revealed that, unknown to him, he had spina bifida occulta. Of course he was very surprised to hear this and was keen to find out more. We were able to send him information in the post and put him in touch with a specialist adviser.”
Helping... with IH
People with intracranial hypertension often call in for advice on managing headaches. For some people alternative therapies such as reflexology and Indian head massage help to reduce symptoms and we can direct people to where they can find out more. Staff always point out that every case is different and they should check with their healthcare professional before proceeding.
Helping... grandparents
The helpline received a call from a lady who had concerned about her pregnant daughter who was carrying a baby with spina bifida. Staff provided her with the relevant information.
Danny Mills Helpline Appeal
