Dr David Milburn and Dr Sara Herriott share the duties of a full-time GP between them while taking care of their three children. Balancing life at Wooda Surgery, Bideford, North Devon with Bethany, nine, George, seven (who is autistic) and Daniel, two (who has cerebral palsy) has never been easy, even with the help of a social services worker who visits their home for 12 hours a week to help look after Daniel.
So discovering Brainwave, a charity for children with special needs, has really helped. ‘Daniel had neonatal seizures from birth until 10 weeks of age,’ Dr Milburn says. ‘No cause was found, and the seizures stopped with medication, which was withdrawn successfully at six months. He failed to progress normally and showed severe developmental delay with spastic quadriplegia, and poor trunkal tone. The Great Ormond Street Hospital confirmed the diagnosis we already suspected when Daniel was about 20 months – moderate to severe cerebral palsy.’
The diagnosis left them with mixed feelings. ‘When Daniel was diagnosed with cerebral palsy, we felt some relief to finally know what we were dealing with, and to know it was not something else, but at different times we felt sad that his life would be so difficult,’ explains Dr Herriott.
Coming from a medical background gave both parents a different perspective. ‘Being GPs did help. Through our work we come into contact with many situations that we would not want to be in,’ explains Dr Milburn. Home life has also had an impact on the way they practise. Although they received a lot of help from other health practitioners, including physiotherapists, portage workers, a local child development centre and a paediatrician, it was encouraging to learn that there were other possibilities.
‘We discovered Brainwave while reading a magazine in an outpatient clinic that was running late,’ says Dr Herriott. ‘We were desperate to try anything that might help Daniel, as long as it did not appear harmful.’
Brainwave helps special-needs children who suffer from genetic or chromosome abnormalities, cerebral palsy or accident-induced brain injury. The Somerset-based centre provides home-based rehabilitation programmes.
Dr Milburn explains: ‘We felt a structured programme might help, plus they have good experience with similar children.’
In November 2002, Daniel met Philip Edge, a therapist at Brainwave for 18 years.
Mr Edge recalls seeing Daniel for the first time: ‘He was having difficulties with movement, posture and variation in tone, but he seemed bright and alert.
On the first day we took a medical history and asked questions about any difficulties during the pregnancy. Then we evaluated and assessed his muscle tone, difficulties with position, balance and co-ordination’.
Evaluation took a couple of hours during which time Daniel saw three or four therapists. ‘After this Daniel had a session in the hydrotherapy pool, and then the family could relax in their bungalow.
Mr Edge continued, ‘On the second day, we had three teaching sessions with Daniel’s parents, each of which lasted about two hours. Daniel’s parents were shown more than 20 exercises and massage techniques to help Daniel improve his posture, activity and motility.They were also shown cognitive exercises involving flash cards and command techniques.
Both parents were impressed by the individual attention given to their son. ‘They looked at all aspects of his development and took into account which exercises he was likely to tolerate,’ says Dr Herriott.
Brainwave programmes involve a two-day initial assessment and family accommodation facilities for the overnight stay. After this, the family leaves with a video and a manual describing the techniques they have been taught. Then there is a day of reassessment every four to six months for an average of two years.
Each session is videotaped so that progress between sessions can be compared, and after each session a report is sent to the GP.
Daniel’s first reassessment was in April. Mr Edge recalls: ‘He had better head control, an increased range of movement in his limbs and he was beginning to grasp better with his hands. He was making better eye contact and could understand key words and his name’. Any developmental milestone is a big thrill and on his second reassessment in September Daniel was able to sit independently for up to a minute.
Seeing that was the most rewarding moment.’ Mr Edge adds: ‘We expect to see improvements in the first year. Over eighty per cent of children we have seen have made significant progress, but in cases where we don’t see progress we use maintenance programmes to prevent regression. I think that Brainwave helps families to establish a routine at home rather than rely on external help. It’s a way of empowering the parents.’
Dr Milburn says they have incorporated Brainwave’s programme into their routine: ‘We now perform the exercise programme at least once daily, taking about an hour. We also use a set of photos to show Daniel what is happening next and to allow him to choose, which he does by eye-pointing and sometimes by touch.
The programme has lived up to our expectations as it has definitely helped Daniel. We believe he would not have made the progress he has without it.
Brainwave has encouraged us to persevere with repeated exercises with Daniel, and to involve a range of people as helpers. Now we have a rota of friends who come to our home and help.
The positive approach from Brainwave helped us at a time when it was easy to focus on negative issues, and to try new things even though they seem impossible for Daniel.’
Dr Milburn added: ‘We were surprised that Brainwave is not more widely known.’