Children and Families Bill

Debate between Baroness Hollins and Baroness Howarth of Breckland

Wednesday 20th November 2013 Grand Committee

[Baroness Hollins (CB)]

My Lords, parents of disabled children often do not see themselves as carers, but they are. Their need for support has been argued and won over the past 20 years. They really are different from other parents. Their right to be able to have a life alongside caring for their disabled child has been fought for very successfully. Parent carers are often so focused on the needs of their child that they forget about their own health and well-being. It could be argued that failing to recognise the needs of the parent carer is against their right to a family life under the Human Rights Act. I was involved with a WHO/Europe declaration, Better Health, Better Lives, which was about the health and well-being of children and young people with intellectual disabilities across Europe and their families. It was signed by all the Health Ministers, including our own, in 2012. One of the 10 recommendations was about identifying the needs for support of parent carers. I join my voice to that of the noble Baroness in this amendment. What is the Government’s rationale for allowing that the carers of a disabled 13 year-old would effectively have rights inferior to those of the carers of an 18 year-old? I hope that the Minister will be able to respond.

[Baroness Howarth of Breckland]

My Lords, I wish to support the noble Baroness, Lady Pitkeathley, in this amendment. The Minister is right in saying that the framework is there in the present legislation or, at least, it should be there. The difficulty is that, because the focus among those who make assessments is split between adults and children and we do not have holistic family assessments, often the parents are lost. A family whom I met recently had just, after many years, been given a period of respite care, but the parent carers had not realised that that would make the difference in their being able to continue to care for their son, an extremely difficult young man. A series of workers had never suggested to them that their needs might be met in order to meet the needs of their child. That is the important message that front-line workers need to understand. This amendment would help them to understand that, unless you meet the needs of parents, you do not meet the needs of children.

I, too, had this query when I heard that it had been commented that to assess parents would undermine the rights of children. Assessing parents enhances the rights of children. Many of us who have worked in this field and continue to work with and meet families see it regularly. We also see when people fail to notice that parent carers are beginning to fail, simply because of their exhaustion and the fact that they have had no relief and no assessment for any kind of services, sometimes quite small ones that would make all the difference to their being able to continue.

I support this because we should have a family approach whereby children with disabilities will be maintained in their own homes rather than having to go into caring facilities because their parents are unable to look after them. I am losing my power of speech, like most of us at this time of night, so I leave it there. My only other point is that the noble Baroness, Lady Tyler, made a passionate speech about integration, which I think we all feel should happen.

Health and Social Care Bill

Debate between Baroness Hollins and Baroness Howarth of Breckland

Wednesday 29th February 2012 Lords Chamber

[Baroness Howarth of Breckland]

My Lords, I wish to add my voice to the need for clarification, as raised by the noble Baroness, Lady Finlay, between the services provided by the national and regional boards for rare diseases and conditions. I declare an interest as a patron and trustee of an organisation that deals with children with hypoplastic left heart syndrome and some similar conditions of right heart defects.

As the Minister will know, a recent Safe and Sustainable review has been looking at how those services should be delivered. Obviously the complex surgical procedures need to be carried out in specialist hospitals, but the aftercare very often takes place locally. The Safe and Sustainable review having stalled during the discussion about this Bill, parents are extraordinarily concerned about how that will be taken forward. I say this as an example but it is true of all families who have children or adult relatives with rare conditions that they want to be absolutely assured that the right service is commissioned at the right level, and need to know how that assessment is going to be made. At the moment it is extraordinarily unclear and I think that is why the noble Baroness, Lady Finlay, has tabled her amendment and the other issues have been raised.

All I am seeking is that clarification, partly because I have got to go and tell the parents this weekend at their AGM.

[Baroness Hollins]

My Lords, I have been reflecting on the amendment tabled by my noble friend Lady Finlay. I declare an interest as one of my daughters has one of the conditions that she mentioned in her speech.

This lacuna must be addressed because the discretionary powers of clinical commissioning groups to apply the appropriateness test provide no assurance for those with these rare diseases. Today’s debate shows that it is essential that this is addressed in the Bill. I hope that the Minister will be able to suggest a way in which perhaps a government amendment might be able to address this lacuna.