Real life story: Pauline

My daughter is a single parent with a 17 year old son and a 3 year old daughter. My eldest grandson has quadriplegic cerebral palsy, epilepsy, learning disabilities, and communication problems since an accident during his birth caused by medical negligence. The stress of caring for him has caused my daughter’s relationship with both her children’s fathers to break down.

Between myself and his other grandparents we look after him most weekends to give my daughter a break. I am one of his deputies assigned by court under the mental capacity act and I undertake a lot of the financial and administrative side of supporting my grandson and daughter, who does most of the day-to-day caring. My daughter doesn’t drive, so I need to pick my grandson up from his after school club and weekend activities with Disability Challengers. I also take him to his holiday club in the school holidays. I also have to look after him during the week on some occasions. He is doubly incontinent so gets regular infections and the pain they cause him means he may scream all night. As my daughter has a 3 year old this is the only opportunity she gets to catch up on sleep.

I also attend appointments with my grandson and daughter because I need to drive her there. I also understand the technical language that is usually used, much better than my daughter, because I used to be an area SENCO before I retired. So I frequently attend school reviews and visits to medical professionals. When my grandson son needed to stay overnight in hospital I stayed with him to feed him. These caring responsibilities have taken over my whole life. I spend at least one day a week just working on paperwork. I had to fight to get property adaptations, paid by disabled facilities grant even though this is not means tested as council expected us to pay for it all from limited medical negligence capital. I will soon have to fight to retain funding for my grandson’s short breaks. The council want to charge us because my grandson has money in the form of medical negligence compensation even though this is against government guidelines. Caring has had a huge impact on my own health. The lack of sleep and continual stress affects the health of our whole family.

My daughter has some overnight care, usually two nights a month if they are not cancelled and an afterschool visit once a month. Supporting her can be a double-edged sword as the assessment takes into account family support, so as a family we receive less help. We often have a couple of weeks at a time when my grandson can’t sleep due to infections caused by his double incontinence. His GP has no knowledge of disabled children and feels that the paediatrician should deal with everything. The GP doesn’t want to know and doesn’t know where to start. We feel like GPs have lost the ability to listen to their patients and try to understand them, instead they just look for a list of symptoms.

When we get to see a paediatrician it is usually fine but there are not enough in our local area; one has gone on training for three months and not been replaced, another one has become part time so they are really overstretched. Once it took 18 months to get an appointment following hospital tests with a view to reducing medication for epilepsy and that experience is not unusual even though we are supposed to get six-monthly checks.

I had to pay for private speech and language therapy as his school had very little knowledge of the technology assistance he required and used the service we paid for to extend their knowledge for others in addition to helping my grandson. Recently we were not informed that orthotics had changed their booking system so now we must get a referral from a GP or paediatrician to make his appointment, even though he has been seeing them for 16 years.

All the professionals just deal with their little bit. Even though in theory they should come to his statement reviews they never do and rarely even send a report. When I push them they can sometimes work better together and I am currently trying to make the paediatrician and wheelchair provider work more closely as we are always supplied with wheelchairs that my grandson can break when excited or angry.

He has also had behavioral problems related to his health and being in pain. We were referred to our local CAMHS but they said it was nothing to do with them as he can’t talk. We went to an educational psychologist but we were told that they only dealt with young people over 18. Eventually the paediatrician just told us she didn’t know what else to do. Transition in our area is a total nightmare and my local parent carer forum is trying to improve things but it is a huge struggle. We have pushed hard to get the support my grandson needs and even though it is hard we know there are an awful lot of parents in worse situations than us because they aren’t able to do the same.