Care Bill [HL]

Baroness Finlay of Llandaff Excerpts

Wednesday 16th October 2013 Lords Chamber

[Baroness Finlay of Llandaff (CB)]

Before the noble Lord sits down, can he just clarify something? Noble Lords will have to forgive me, because we have had some very learned legal arguments here and I speak as a simple clinician. Half of the patients in a place of care run by a private provider may be funded by, and have gone through assessments provided by, the NHS. They would therefore be covered by the Human Rights Act but the other half, who have to fund their own care because some official somewhere said that they did not fall within the bar for continuing care funding, would not be covered. The decision as to whether the cover, at the end of the day, applies or does not apply will be left to whichever person determines the funding bar for that individual, as opposed to our knowing that we have protection for those who are vulnerable across the piece.

[Lord Faulks]

The noble Baroness refers to protection. With respect, the assumption behind her question is that, whatever the arrangements, those people would lack any protection. The burden of my speech is that they would have protection anyway. There is, of course, a distinction between whether their care is a result of a publicly procured arrangement or a purely private arrangement. In the latter case, as the law is currently, there would not be any involvement of the Human Rights Act. But, with respect, the House should not be under any illusion that there is no remedy or no protection for people in the circumstances where there is a private arrangement.

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[Lord Patel (CB)]

My Lords, I shall speak also to the other amendments in my name in this group. I thank the Minister for the government amendments, which go a considerable way towards helping the arrangements for the transition of children to adulthood. My amendments are intended to strengthen that. I thank my noble friend Lady Finlay for putting her name to the amendments.

Amendment 83A is one of a series of amendments which I have tabled with the intention of bringing about better outcomes for young people who need to transition from child to adult palliative care services. These young people are represented by the Transition Taskforce, a partnership of organisations which includes Help the Hospices, the National Council for Palliative Care, Marie Curie Cancer Care and Together for Short Lives. All these organisations support these amendments.

I have spoken previously at other stages of the Bill about the 40,000 children and young people—these are the numbers we are talking about—aged from 0 to 19 in England who live with long-term health conditions, which for most of these children will eventually end their lives and for which they may require palliative care. Medical advances mean, however, that young people with a range of different conditions now live to adulthood—some 10% of the 40,000 children now live beyond 19 years.

Good planned transition, when it works, changes the lives of these young people. Unfortunately, for the majority that is not happening. I will give the example of one young girl, Lucy Watts, who is 20 years old, and has Ehlers-Danlos syndrome, which means that Lucy has a number of inherited conditions which were diagnosed by the time she was a teenager and is unable to eat normal food. Her system does not digest food and she is fed intravenously all the time. While she is able to sit up for a few hours a day, Lucy spends most of her time in bed. Lucy’s mum, who has a full-time job, carries out the majority of her care and all of her day-to-day medical care.

However, Lucy is fortunate, because her transition to adult service was excellent because there was joint working between children’s and adult services over the course of a whole year. That is the important point. It takes a long time for transition arrangements to be put in place for these children. Lucy is quite a feisty young lady. She said:

“Transitioning from children’s to adult in the medical and social world is a huge step ... The people involved in my care have been very supportive and were brought in before I started the transition”.

Lucy’s case demonstrates how important it is for young people and families that their transition is planned well in advance of their 18th birthday and why our amendments to stipulate a timeframe for a child’s needs assessment are so important.

I very much welcome the fact that the Government have amended the Bill to ensure that when it appears to a local authority that the child or their carer is likely to have needs for care and support after the child becomes 18, the local authority must assess them. I appreciate, too, the Government’s stated position that the needs of very young people are different and that their care needs can change between the ages of 14 and 18 in a variety of ways. However, our amendments would provide flexibility by ensuring that assessments could be initiated before the age of 14 if requested by the child or parent or if it appears to the local authority that an assessment is necessary and appropriate. Local authorities would have until the age of 16 to assess the child’s needs. They would not be prevented from reassessing a young person if their needs changed before they reached 18. They would also enable local authorities a period of two years to assess the child’s needs in cases where their care needs become apparent only after the age of 14. Without these important thresholds, it is feasible that a local authority may leave it too late to carry out a child’s needs assessment.

Setting the age threshold for a child’s needs assessment at 14 is also based on the existing statutory requirement for every young person in year 9—that is, aged 14 to 15—with a statement of special educational needs to have a transition plan. Our amendment would ensure that transition planning correlates with that requirement and reflects best practice in exemplary palliative care services in England. It is entirely reasonable that some young people with life-limiting conditions, including those with conditions such as Duchenne muscular dystrophy and cerebral palsy, could be expected from an early stage to live beyond 18. Assessing and planning for their future needs should therefore begin at the age of 14. Our amendments would ensure that this is the case without disadvantaging young people with other disabilities, which is the concern that was expressed. The Bill already stipulates that where a local authority deems a child’s assessment not to be in the best interest of the young person or the young person does not consent to being assessed, an assessment will not take place.

Amendment 89B, which is a long amendment, corrects the anomaly of the transition and the duty on local authorities. While the Bill currently makes provisions to enable local authorities to carry out a child’s needs assessment, there is no duty on local authorities to use the assessment to create a transition plan for the young person. Amendment 89B would ensure that, if a child’s needs assessment finds that a young person is likely to need health or social care when they reach adulthood, a statutory five-year rolling transition plan should be prepared by the time they are 16.

The amendment has a number of other important features. It would ensure that children, parents and carers were involved in the transition planning process and that transition plans are maintained until the young person reaches the age of 25, which 10% of these children would probably reach. Further, one of the provisions included in the Children and Families Bill is to introduce an integrated education, health and care plan—or EHC plan—for young people who have special educational needs. This will include many—but, crucially, not all—young people who need palliative care. Where a young person stays in education or training, they will be eligible for an EHC plan until the age of 25. I recognise that an EHC plan could fulfil the functions which I intend the transition plan in my amendment to fulfil. An optimal position would be for EHC plans to be available to all young disabled people up to the age of 25—but that is not the case. Our amendments will provide similarly joined-up transition provision for young people who need palliative care but do not have SEN.

Amendments 93A, 94A and 94B would amend and address the carer’s needs. In considering young people who need to transition from children’s to adult services, it is also important that we address the needs of those who care for them. I welcome the Government’s aspiration to do so and the amendment that the Government have already tabled to strengthen the Bill. However, as with the clauses relating to planning for young people’s needs on transition, we need to go further in order to ensure that planning for carers also happens in a timely fashion. Amendment 93A would introduce an age threshold of 14 at which a local authority would be duty-bound to undertake a child carer’s needs assessment.

I hope that I have persuaded the Minister that his amendments, excellent as they are, need a bit more tweaking to make it possible to streamline the process of transition of children to adulthood. My amendments merely help to do that. Some children may of course begin to need long-term health or social care after they are 14. In such cases it may not be reasonable to expect a local authority to complete a child carer’s needs assessment before the child reaches the age of 16. I hope that the Minister will be persuaded enough to add to his excellent amendments a few more to fulfil these needs. I look forward to hearing his response.

[Baroness Finlay of Llandaff (CB)]

My Lords, I am most grateful to my noble friend Lord Patel for the way in which he has introduced our amendments. I greatly welcome the Government’s amendments in this area of transition. The reason that our amendments are written as they are is because this group of children are different to adults who are terminally ill. They have life-limiting conditions, but their prognosis may be years. However, during that time they know that they will deteriorate, as do their parents. We are therefore looking at completely different timeframes, and with completely unpredictable prognoses, except for the likelihood that they will live through into adulthood. Some of them, of course, live surprisingly long periods of time and may live several decades into adulthood. They tend to have the inherited disorders of metabolism. They are a different cohort from those who have terminal illnesses such as cancer. There are also those children who, for example, have had very severe sudden injuries, such as a severe head injury, and then develop epilepsy, which can then become so severe that it is life threatening. Many of the children also have learning difficulties and educational needs.