Vulnerable Children

Baroness Brinton Excerpts

Thursday 14th December 2017 Lords Chamber

[Baroness Brinton (LD)]

My Lords, I welcome the noble Baroness, Lady Dean of Thornton-le-Fylde, to the mobility Bench. I congratulate her on securing this debate and the Children’s Commissioner on her excellent report.

I will start by focusing on children with either mental or physical illness, disability or infirm condition, which covers two of the sectors in the report. Your Lordships’ House will remember that during the passage of the Children and Families Bill we discussed at some length amendments to provide support for pupils with medical conditions at school. The statutory guidance issued in December 2015 laid a clear burden on schools and various other associated education partners to ensure that children with long-term, life-limiting medical conditions were treated and supported appropriately in the education environment.

The Health Conditions in Schools Alliance carried out a survey of 200 schools and found that 47% had a medical conditions policy in place—which is encouraging two years after the guidance was introduced—but that only 11% had guidance that complied with the Government’s standards. Earlier this year, Young Epilepsy conducted a survey of young people with epilepsy, their parents and carers to find out whether they are getting the support that they needed. One in three young people with epilepsy still does not have an individual healthcare plan at school, which should set out essential information, including what staff do in an emergency. Two out of three healthcare plans do not include how epilepsy might affect learning. One of the key points in the progress of the Children and Families Bill was to make sure that health and education were completely at one—because you could not treat a child’s education completely separately from a long-term condition.

Only half of the families surveyed said that school staff had been trained to support a young person with epilepsy. One in six young people with epilepsy is excluded from activities in school. That is not good enough. The stories that your Lordships’ House heard about children excluded from activities at school because of their condition is one reason why the guidance was approved. Is the Minister prepared to ask that all schools publish their medical conditions policies on their websites, and that school inspections should include a routine check to ensure that support for children with medical conditions is there?

The second group of vulnerable and hidden children I want to talk about is those whose numbers we do know clearly—or at least, the Department of Health knows them. These are children who are born with or develop terminal conditions and who require consistent and excellent support. Noble Lords will know that I have spoken on this matter on more than one occasion in the House, but the lack of support that these children are getting is an outrageous scandal. Only a third of CCGs say that they are implementing the Government’s Our Commitment to you for End of Life Care policy, while a further 19% say that they are thinking about doing so. Some 93% of CCGs are cutting support for respite and palliative care for this vulnerable group of children. Although 63% of CCGs commission services to provide community paediatricians, only 29% provide out-of-hours care.

These dry figures are easily remedied by one blog from a mother. The Nascot Lawn centre is just down the road from me. It is one of the very rare centres that provides proper medical respite care for very severely ill children. Lennon, aged 10, was first referred to Nascot Lawn when he was two years old. I will give an idea of the complexity here. At the time he had a Hickman line, fluids, 24-hour oxygen and a 24-hour PEG-J feeding tube into his stomach. After a few months of “tea visits”, the staff at Nascot Lawn and the family all made the decision that respite care at the NHS-run Nascot Lawn would not work due to his complex medical needs. He was too medically complex even for that NHS medical respite care centre.

When he was in Great Ormond Street Hospital, which treats the most medically complex children in the country, he was under 16 different specialist teams. Sadly, the local CCG has decided that the Nascot Lawn centre is not necessary because it provides respite care, which the NHS does not support. I hear mutters to the effect that, “That is nonsense”. It is complete nonsense, because after the announcement of the closure, Lennon’s mother went through a series of interviews with all the health professionals, but they could offer only one centre four hours away from their home for just one weekend’s respite a month, which was what they had been getting up to that point.

The family was then told that that was not practical, either. To quote from Lennon’s mother’s blog, they were then faced,

“with the impending reality of being solely responsible for a child requiring an extreme level of medical input, with no overnight respite for the indefinite future … Getting up every 2 hours throughout the night, every single night is exhausting. You cannot roll over in bed and make a decision to ‘skip’ getting up because you simply don’t have the energy. You have to drag yourself out of bed, force your legs to carry you to your son’s downstairs bedroom and wake up enough to be competent in carrying out the procedures … Life or death is a huge responsibility for any parent to have to deal with. No one would expect a nurse in a hospital to work the hours parents do, or take on the responsibility that parents take on when they are caring for a medically complex child”.

What was the solution offered, given the impending closure of the respite centre? The blog continues:

“We were later advised to consider looking into a 38 week a year residential placement for Lennon—potentially costing the NHS in excess of £200,000 a year”.


The Nascot Lawn centre costs £600,000 a year to care for all the children who use it. The really sad news is that Lennon died in August, as his parents knew he would. But there are other parents who are looking at having to lose their children because the NHS has withdrawn its support.

I ask the Minister whether he will continue, as I know the noble Lord, Lord O’Shaughnessy, has, to look at what the NHS can do for these children. Why is it important for the education Minister to do this? It is because of the link between the Department of Health and the Department for Education in making the best provision for a child that was so clearly set out in the Children and Families Act 2014.

In my last few minutes I will pick up on some general themes on behalf of my Benches. The one core message that is absolutely evident in the Children’s Commissioner’s report is that we seem to have lost our way with collecting data. Data is vital if we are to understand the problems. I urge the Minister to consider that for this particular group of children there should be one Minister with responsibility for looking at data across departments to make sure that we do not lose sight of these children. I do not mean only those I have spoken about in the physical and mental health category, but across the board. It has to be the responsibility of the Department for Education to ensure that all our children get the best support in life.

The noble Lord, Lord Balfe, spoke of the importance of making sure that we do talk about statistics. I am worried that, in the bonfire of regulations that was really taken on board post 2010 and seems to have continued since then, even government departments do not have the capacity to understand what is happening in their own department. The noble Lord finished by commenting—I believe that these were his words—“We often demand but we do not say how we should pay. There is a limit to state spending”. No, no and no again. The children who have been discussed in the debate absolutely deserve their human right to receive support from the state. There has been much consideration of austerity in other debates in your Lordships’ House. Austerity for these children means that their lives will continue to be destroyed. As my noble friend Lady Benjamin said earlier, it is really important to remember that childhood lasts for life. Children like Lennon and many others are facing severe cuts in support. Austerity means a life cut short and families struggling to cope from day to day. Our children deserve better.