A Unique Child: Inclusion - Supporting ... Finn

'Finn has special blood and he can't run because if he does, he may fall over and hurt himself,' says Finn's friend Dylan, who attends Benger Bears pre-school in Wiltshire.

Four-year-old Finn has haemophilia. He has attended the pre-school in Sutton Benger for over a year. The blood disorder means that his blood does not clot normally. This can cause bruising, bleeding into muscles and joints, prolonged bleeding and serious internal bleeding.

Internal bleeding can be life-threatening, while repeated bleeding in the joints can lead to arthritis or long-term joint damage. Haemorrhages into the brain are particularly difficult to manage and may be fatal.

The symptoms of haemophilia can be mild, moderate or severe. However, Finn has a rare, severe form of Haemophilia A, and so every morning he is injected with a plasma-derived clotting factor into a central line in a port - a device which has been surgically inserted under his skin on his chest.

Once injected, the factor travels through the tube that is placed into his vein, ending up in a large blood vessel outside his heart. The port is covered in a dressing to protect it from infection and he can't get it wet, as it could lead to a serious infection.

STARTING NURSERY

When staff at Benger Bears learned that haemophilia is potentially a life-threatening disease if not managed correctly, they were extremely daunted by the prospect of him attending the pre-school.

Vanessa Cooper, deputy supervisor and his key worker, says, 'We met with Finn's haemophilia nurse and when she went through all of the things we would need to be aware of, it seemed quite frightening.'

The staff had several meetings with Finn's mother, Sue, and a whole host of professionals, including his haemophilia nurse, the specialist adviser from Wiltshire council's physical impairment unit, his health visitor, his occupational therapist, the council's inclusion adviser and a children's community nurse who works with families with complex medical problems.

The setting drew up a healthcare plan and a risk assessment plan.

'We got foam finger guards for the doors in the setting to protect him from injuring himself and we asked the village hall committee, as the pre-school is run from the village hall, if they could purchase a small freezer to store ice packs,' says Ms Cooper.

The ice packs are vital. If Finn has a fall, he has to be kept immobile and have ice packs put on the bruised area.

His parents worked closely with the pre-school and managed to secure 15 hours of inclusion funding from the local authority for one-to-one supervision at Benger Bears.

'That has made a huge difference,' says Finn's mother. 'He wouldn't be able to attend the pre-school if the pre-school hadn't got that funding. He needs someone to steer him away from potential accidents and to make sure his port doesn't get wet, because that can lead to infection.'

LIAISON WITH PARENTS AND STAFF

Every morning, when his mother drops Finn off, she shows his key worker a book that has a picture of Finn's body where she has plotted any bruises he may have.

'We use the pictures because they say pictures say a thousand words,' she explains. 'The staff can then keep an eye on the bruises and make sure he is not limping or using one arm more than the other, which would be a sign of a joint bleed. When I pick him up, they do a verbal handover and update me on any developments during the day.'

Ms Swannack, the pre-school supervisor, says, 'We record any bruising in our staff contact book and also if he has had a bad night or is feeling grumpy, as this could make him more prone to having an accident.'

The pre-school also has in place an emergency plan, depending on the severity of the injury. Finn's mother is the first port of call and if it is very severe, the staff know they have to ring for an ambulance.

Finn has a second key worker, Alison Larkins, who takes on the role if Ms Cooper is absent.

Every few months, the staff meets with a team of multi-agency professionals, including the health visitor, the inclusion officer, the children's community nurse and the occupational therapist, to discuss any developments or problems.

INFORMING THE OTHER CHILDREN

The children all know that Finn has to be careful and not run, and they talk about his 'special blood'.

To help explain things further, Sue gave a talk to the other children using Daniel Doll, a child-sized doll with a port and a central line.

She says, 'I went in and explained as much as you can to threeand four-year-old children. They practised taking blood using a syringe, which we simulated with food dye. I showed them that Finn has an injection every morning and said that is why he has a big pad on his chest.'

She has found that many people are scared when they hear that Finn has haemophilia.

'When people understand what it is, they feel more comfortable,' she says. 'There are a lot of myths and people think the blood will gush out. But haemophiliacs don't bleed any quicker, they just bleed for longer.'

INCLUSION

'Our main aim is for Finn to feel he is just like any other child at the setting and to be included in everything we do,' says Benger Bears supervisor Karen Swannack. 'If we are planning a trip or something that has an element of risk, we carry out a risk assessment and plan it around him.'

Ms Cooper adds, 'He does PE with the other children, so we make sure we either hold his hand or stand very close to him, as they all get very excited when they do PE and start rushing around the place.

'We keep a close eye when he is outside playing on the bikes and trikes and if Sue wants us to, we put knee and shin pads on him. We do have to be aware and be on the ball all the time.'

Last spring, Finn had some serious joint bleeds and had to remain non-weight-bearing, which kept him in a wheelchair for 12 weeks.

It was a difficult time for his family and Sue says the setting was invaluable in giving her respite.

'Some of the activities had to be adapted. Whatever we did, we made sure he could join in. We put the garage and cars on a table so he could play with them from his wheelchair,' says Ms Cooper.

It has made a huge difference for Finn's mother. She says, 'The staff have been great and Finn is fully integrated into life at Benger Bears. He is just like any other child there and he is really happy. The inclusion funding has really worked.'

Finn is due to go to big school in September. He has received a statemented from the local authority and will be receiving one-to-one supervision for most of the school day.

FACTS AND FIGURES

• - Around 6,000 people in the UK have haemophilia.
• - Usually only boys get haemophilia, although girls can have a mild type of it and there are a very tiny number of girls in the world who have proper haemophilia.
• - Haemophilia can be mild, moderate, or severe, depending how much factor is in the blood.
• - There are two types of haemophilia, the most common being haemophilia A, in which Factor VIII is lacking.
• In haemophilia B, Factor IX is lacking
• - The main problem is internal bleeding into joints, muscles and soft tissues. Haemophilia does not mean that sufferers bleed more than anyone else, but it means they bleed for longer.
• - There is no cure for the disease but it can be controlled with regular injections of the deficient clotting factor.

MORE INFORMATION

• - The Haemophilia Society, www.haemophilia.org.uk
• - A cartoon that explains to children what haemophilia is can be found at www.youngbloods.org.uk/Interactive/New+Cartoon+for +Kids/New+ Cartoon+for +Kids.htm
• - Haemophilia in the classroom booklet, www.haemophiliacare.co.uk/pdfs/Haemophilia_class_booklet.pdf