End of Life Care

Baroness Bakewell of Hardington Mandeville Excerpts

Tuesday 14th March 2017 Lords Chamber

[Baroness Bakewell of Hardington Mandeville (LD)]

My Lords, I congratulate the noble Baroness, Lady Finlay, on securing this very important debate. My contribution is specific and restricted entirely to children who have life-limiting conditions, in particular those under the age of three. Young children with complex medical conditions receive no support from the state. They may require specialist equipment. They may need adapted buggies, beds or cots. There will be considerable strain on the family, especially if there are other siblings. However, there is no support for these hard-pressed families.

In January, the BBC’s “Spotlight South West” featured the case of a two year-old boy from Devon with Tay-Sachs disease. This arose from his family not having the financial means to secure the specialist vehicle they needed to transport him in a wheelchair. Because he is under three, his family are denied access to the disability living allowance mobility component. Had they been able to claim this benefit, it would have enabled them to achieve some simple but important objectives, such as going to the park. Most families take this activity for granted, but this family were not able to enjoy the fresh air, feed the ducks or watch the birds.

In 2016 there was a 61% cut in funding for children’s palliative care charities from upper-tier local authorities, despite these having a statutory duty to provide short breaks. However, their annual statement of provision gives no detail on this particular provision. Short breaks provide important relief for families. The lack of a break could lead to family break-up, and other siblings may suffer.

Adult hospices receive 33% of their funding from clinical commissioning groups but children’s hospices receive only 25% funding. Some CCGs do not fund children’s hospices at all, on the basis that their ethos means they are unlikely to turn children away. It is, as the noble Lord, Lord Judd, said, a postcode lottery. Best practice is to be found in Luton, where the NHS, local authorities and GPs are collaborating. Some areas do nothing, not recognising the problems that these families face. Can the Minister say how the Government will support CCGs to recognise the benefits of funding vital, cost-effective, non-clinical child palliative care services for the whole family to enable them to cope more effectively with their situation, and thus deliver both short-term and long-term savings for CCGs?

The charitable organisation Together for Short Lives has been pressing the DWP to change the DLA rules so that children under three who depend on access to a vehicle for a variety of reasons can access the mobility component. They are already recognised by the DfT as having specific mobility needs through access to the blue badge parking scheme—so why not by the DWP?

The families of children with very complex needs deserve support. They wish to do the very best for their child’s short life—to make the most of their time with their child and have happy memories to comfort them when their child has died. This is not just about the quality of life for such children; it is also about the quality and dignity of their death.

The number of children and young people with life-limiting conditions is increasing. Children’s palliative care charities want to provide vital care for every child who needs it, but state funding is not keeping pace with demand. A 2015 report showed a 50% increase over 10 years in the number of children with life-limiting conditions in Scotland—from over 4,000 in 2004 to over 6,000 in 2014. If this was replicated across the UK, the number of children with life-limiting conditions could be much more than the current estimate of nearly 50,000.

The number of these children has never been monitored. As a result, the Government, the NHS and local councils are failing to plan accurately and budget to meet the needs of children and young people in this category. What action can the Minister commit to in order to better understand the number and needs of children with life-limiting and life-threatening conditions? I look forward to his response.

Social Care

Baroness Bakewell of Hardington Mandeville Excerpts

Thursday 1st December 2016 Lords Chamber

[Baroness Bakewell of Hardington Mandeville (LD)]

I draw your Lordships’ attention to my interests, as entered in the register, as a district councillor and a vice-president of the LGA.

I am grateful to the noble Baroness, Lady Pitkeathley, for securing this important debate and agree with much of what she said. This subject is at the top of everyone’s agenda up and down the country. Many were expecting some sort of recognition of the crisis in social care in the Autumn Statement, particularly as the sector was calling for £1 billion to be invested to stabilise the situation, but there was not even a passing reference. It is astounding that the Chancellor does not regard it as important enough to tackle. Having said that, I look forward to all the contributions this afternoon and especially to that of the noble Baroness, Lady Cavendish of Little Venice.

Government data show that 32 care home businesses failed in 2010. That figure went up to 74 in 2015, while 34 have failed in the first six months of this year. These range from family-owned businesses to nationwide operators. A total of 380 homes have closed in six years, and the care industry is in turmoil. Care homes are enduring an unprecedented squeeze on their finances. Local authority fees have reduced by 5% in real terms over the last three years, while care costs have risen at a faster rate than inflation, particularly staffing overheads. Last year’s 2% rise in council tax for social care was insufficient. The living wage, although to be welcomed for hard-pressed vital staff, has not helped care home budgets.

Four Seasons, the biggest care home operator in the UK, with more than 400 properties, recorded a pre-tax loss of £264 million last year, which includes write-down on the value of its care homes. There are many other similar examples. In Somerset, the county council has a panel which looks at all new packages of care and is currently proposing to reduce 75% of packages for budgetary reasons. Despite this, Somerset’s overspend will be £9 million. Adult social services are having to compete with children’s services, which are also predicting an overspend but are in line for some of the £5 million contingency fund which has been earmarked for them.

The facts are stark. Local authority grants have suffered cuts of approximately 40% since 2010. Despite this, the vast majority of councils have protected services for vulnerable people. Local authorities have substantially reduced the point on the safe hierarchy at which residents will be eligible for care, as we have already heard. Many now provide support only to those assessed as in critical need. There are some councils on the cusp of major service failure due to the funding crisis. What plans do the Government have for picking up the pieces?

Apart from last year, council tax has been frozen for several years, with government incentives, thus curtailing local authorities’ ability to predict and solve their own problems. Should there be another 2% precept for social care in 2017, this will help only marginally, as the problem is now, not next year. As we all know, there are increasing numbers of older people, and this results in more demands. We are now seeing care homes refusing council contracts as local authorities cannot afford to pay enough. Many older people, funding their own care, are subsidising local authority contracts, as the noble Baroness pointed out.

One consequence is more elderly people being admitted to A&E as preventive care is not available. This then puts more pressure on the NHS. Integration of social care with the NHS could be part of the answer, and I look forward to the work my colleague in the other place, Norman Lamb, is doing towards a commission on this subject. But extra funding will be needed to make this happen. The better care fund is a move towards this, but the funds needed are large, and the better care fund is small. Inadequate funding of care means elderly people are ending up in hospitals, adding to the strain on the NHS, as elderly people admitted after falls and infection then become stuck in those hospitals.

My noble friend Lady Pinnock, who is unable to be with us today, tells me that when she was leader in Kirklees, they built two care units to act as post-hospital or return-home places, some residential and some day care. Both of these units can no longer be resourced by the council because of cuts in funding. Council leaders believe the Chancellor’s claim of investing £3.5 billion by end of year is inaccurate. Better-off areas where people can pay will manage, but deprived areas are doubly hit as they cannot meet their own costs.

I leave your Lordships with the personal story of a lady who did have someone to help her have a bath, who has had her hours cut and been told a strip wash will do. Is this really what we, as a nation, mean by dignity in old age?

Abortion

Baroness Bakewell of Hardington Mandeville Excerpts

Thursday 3rd April 2014 Grand Committee

[Baroness Bakewell of Hardington Mandeville (LD)]

My Lords, I would also like to thank my noble friend Lady Knight of Collingtree for instigating this debate, but I am coming from a slightly different angle. At a time when medical science is advancing by the month and extremely pre-term babies who are born before 28 weeks are able, through intervention, to survive, we must maintain a respectful balance between terminations and live births.

Statistics from the World Health Organisation show that in England in 1995 the survival rate of very premature babies was 40% and in 2006 it was 53%. The survival rate increases by 9% for each week after 24 weeks. However, knowing these statistics will not diminish the anxiety caused to the mother whose baby has been predicted to be premature.

The issue of terminations on the basis of the predicted sex is a product of the advance of medical science. When I was pregnant, ultrasound scans were not routine. This meant that the baby’s sex was a wonderful surprise at birth. Nowadays, scans are routine and offered at 12 and 20 weeks. It is now possible to see what the sex might be. Some parents do not wish to be told, but others are told.

Perhaps a more ethical way would be not routinely to offer knowledge of the sex of the child except where medical reasons, certainly not social reasons, might require it. For some parents with a family of all girls or all boys, the temptation to know and perhaps terminate could be overwhelming. We should not put such temptation in their way.

As a society, we must maintain a strong balance where the survival of premature births is always ahead of the length of gestation at which termination can take place.