Wheelchair users and their families are having to suffer unnecessary pain and distress

C, who has just turned 15, has quadriplegic cerebral palsy and uses a wheelchair to get about. C can’t independently transfer so is reliant on his mother for most things. C developed a significant scoliosis last year to the point that his head is often at right angles to his body – C is awaiting surgery, but the wait is currently over a year and a half from when you are listed.

C had a growth spurt last term which resulted in him putting a lot of pressure through his heels as his upper legs were no longer supported by his chairs. C developed deep pressure ulcers under both heels which then became infected. C is also rubbing the skin on the left side of his torso as he leans that way, and the skin is starting to break down – this may affect him having surgery.

C’s mother contacted Millbrook through the weblink at the end of November to get C’s power chair adjusted – C needs both the seat depth changed, and the lateral supports and head rest adjusted to accommodate the growth spurt and the increasing scoliosis and to reduce the pressure on his skin. C’s mother heard nothing at all so called again in mid-December and was told C would be put on the list for an initial assessment. (The person C’s mother spoke to would not action anything until she gave her the make and model of C’s powerchair which she found obstructive – C’s mother does not believe people phone up this sort of service as a hoax!)

C’s mother still heard nothing, so before Christmas she emailed, Millbrook’s Community Health Engagement Officer (CHEO) who is there to help resolve issues such as this and work to improve the service.  The CHEO said he would chase it and that C’s mother should be contacted after Christmas as C was a priority. C’s mother received a phone call to offer an initial appointment in January.

The delay in receiving the service C needs is having a detrimental effect on C – he needs his chair adjusting to slow down his deterioration – it is imperative that he sits well in it and is comfortable – his spine is painful now and he is crying in the evenings and asking to go to bed to reduce the pain, so he is missing out on family time. C’s mother has to keep adjusting him in his chair which is having a detrimental effect on her health as it hurts her back when she has to keep pulling him over to sit him up straight – In all honesty C’s mother is not sure how much longer she can continue to do this.

There was no contact from Millbrook until C’s mother emailed the CHEO but she shouldn’t have to chase Millbrook – Wheelchair users and their families need to be kept informed of what is going on.

C’s mother has had to take a day of leave from work to accommodate the appointment in January as the next appointment was not until March and they can’t wait that long. C has lots of appointments and C’s mother can’t afford to use all her leave entitlement for his appointments. The appointments for all services are getting sparser and sparser so C’s mother is using more and more leave, which is a wider system issue. C has also had to have another day off school for an appointment – his schooling is suffering as he is often off school for these things. It would help people like C, with his school attendance and C’s mother’s work if appointments could be done in school. C’s mother hopes that the wheelchair can be adjusted sufficiently at this initial appointment or they will be waiting for a further appointment to sort out the current issues.

Lack of communication and long waiting times mean those who use wheelchairs and their families are having to suffer unnecessary pain and distress which is unacceptable.