Parents of seriously ill babies make enormous sacrifices – but being able to leave the house as a family shouldn’t be one of them.
Tomorrow, members of the House of Lords (or ‘peers’) have an opportunity to give an amazing Christmas gift to families of babies and young children who are likely to have short lives – the precious gift of being able to show their child what life is like outside of their own home or hospital bed.
It sounds so simple as to be almost ridiculous. But the fact is that for some of the families of the 1,500 babies and young children in England alone who depend on large, heavy ventilators and other equipment just to stay alive, going anywhere beyond walking distance is impossible. These families need specially adapted, broad-base cars which have space for (and can take the weight of) the vital equipment and special buggies which their babies need. These vehicles exist – however, they are very expensive and are often beyond the means of these families.
The government recognises that some disabled people (both children and adults) need financial help to meet their mobility needs. For children up to the age of 16, the mobility component provides up to £57.45 per week. However, children under the age of three are barred from this benefit. This is because the Department of Work and Pensions deems that the majority of children can walk at the age of 2½ – and that by the age of three it is realistically possible in a majority of cases to make an informed decision as to whether a child’s inability to walk is the result of disability.
Yet ability to walk is an irrelevance to babies and young children who depend on ventilators. Many do not live long enough to pass the age threshold set down by ministers. In the meantime, their pressing mobility needs go unmet. This means that things that even some families of older children with life-limiting conditions can do – such as going shopping or visiting family – are often beyond reach. It also means that babies and young children are being trapped in hospital beds unnecessarily because they cannot be transported home – an awful situation for their families and a clear waste of taxpayers’ money.
I recognise the difficult financial circumstances in which the government has to operate. However, rectifying this anomaly would cost just £4½ million per year.
I don’t believe that the government has purposefully set out to stop seriously ill babies and young children from being able to access the financial support they need to afford appropriate transport. Indeed, ministers have already amended regulations to give this group of children access to blue parking badges. Baroness Sherlock and Lord McKenzie’s amendment (62B*) to the Welfare Reform and Work Bill would bring about the legal change needed to remove this anomaly in the welfare system. I urge ministers to accept it and peers to support it. By doing so, they can help families with little time together to make precious memories by doing some of the simplest things which we all take for granted.
Barbara Gelb OBE is Chief Executive Officer of Together for Short Lives and has spent her career working to improve care services for children. Click here to access our briefing for peers, which sets out our position on this issue in more detail.
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Comments
Our daughter has a life-limiting condition called Edwards syndrome trisomy 18. She is the only survivor in the whole of south Yorkshire who is still living and fighting all odds. No babies survive until infancy. Only 5 percent do. She is now 17 months old and going strong, however she is unable to do much. Due to her immune system we are unable to take her out to make our memories because disability won't allow her to have mobility. We have a specialised buggy, suction machine and feeding equipment pump; the list is endless. We wouldn't risk public transport for infection reasons. It's not hygienic with passengers being poorly. She catches any infection that may be around. Please we beg you to change this week as we don't know how far or how long she is going to be with us. We would love to make more memories but simply we can't due to her being ill most of the time. This needs to change. Someone please have a day of someone's life with a child that's terminally I'll and come back and say you would be able to do this as I know many wouldn't . Many ask how we cope I guess we do our best for our ability but mobility for children under 3 should be given. Thank you for taking the time to read.
Having a child with a life-limiting condition is a traumatic and emotionally draining situation without the additional stresses and strains of the physical constraints of the basic equipment needed just to get out of the house. Let's have fair play and equality for all children in this situation, regardless of age, their families need as much support as possible.
Our youngest daughter has a life-limiting illness and has been of limited ability and high dependence for over eighteen months but we have only just started to get help from mobility after her third birthday. Small things have made a big difference. We are now able to get her in and out of our car without difficulty and without bumping her. Because she is floppy and heavy it was difficult to manoeuvre her into our small family car, fitting her mobility pushchair in to the car was impossible if we wanted to go out all together as a family. Feeding her via her NG tube on journeys was tricky with limited space and recently over the last few months someone had to be sat in the back between car seats to make sure she did not choke or stop breathing. The age needs to be lowered especially for people whose needs are even greater than ours.
This is a must for all families with a child with serious complex medical needs. Having had to wait until the age of three for our child to qualify, we know the struggles others face. Criteria must be strict and assessment key to stop people 'assuming' that they qualify rather than having a genuine need.
Our daughter has Edwards syndrome trisomy 18 we are from Caerphilly South Wales she is now 15 months old but comes with lots of accessories feeding pump oxygen suction adapted pushchair I also have 3 other children with a seven seated car with 2 pushchairs and no leg room for other children so a day trip out is tricky let Alone a holiday with luggage feeds syringes sterile water medicines spare oxygen etc and I too would not contemplate public transport as immune system is compromised I really do hope this law gets changed as it would improve our family life together treasuring memories of trips out thanks.
Sky Disson: My daughter has a life limiting condition and this is something we have struggled with for 2 years. My daughter depends on medical equipment but also her legs are fixed straight so her feet touch the front seat we have got the biggest car we could find for her yet her feet are still touching the front seat. All medical staff have said in cases like with my daughter mobility should be given early. It is such a struggle to leave the house because she is so uncomfortable in the car. Only 4 months to go until she is 3 and I know it will make our lives so much easier cannot wait. How did it go?