Support for Life-shortening Conditions

Kirsty Blackman Excerpts

Tuesday 7th June 2016 Westminster Hall

[Kirsty Blackman (Aberdeen North) (SNP)]

It is an honour to serve under your chairmanship, Mr Percy. I am pleased that the hon. Member for Pudsey (Stuart Andrew) has brought the debate to the House. I raised the matter at business questions during Children’s Hospice Week, and I am glad to have the opportunity to speak in a debate about it.

There have been many interesting contributions today, and I am pleased that so many people have taken so much time not just to research the matter but to go and meet people, hear their real-life stories and bring them to the House. That is really important; it is not just about numbers, it is about the impact on people’s lives, and the debate has been good at highlighting that.

I thank Together for Short Lives, which prepared a briefing that many of us have seen, and the Aberdeen charity Charlie House, which has provided me with a lot of information in advance of the debate so that I can speak on behalf of families. It is key that we get as much information as possible, including about real-life scenarios. In paediatric palliative care, we are pretty much having to make things up as we go along. That is not any kind of criticism of those who work incredibly hard and do a huge amount of research to try to make lives better, but it is a situation we have not been in before.

The Children’s Hospice Association Scotland produced a report in 2015 that explained that we are seeing an increase in the prevalence of children and young people with life-limiting conditions, which is projected to grow further. As a result, the situation throughout the UK and the world is uncharted territory. We cannot just say, “This is best practice” and lift it, because we are all having to find our way in this scenario. As a result, Governments throughout the UK—the devolved Governments and the Westminster Government—are not necessarily getting everything right, because this is a new scenario for all of us. The best way to ensure that we get this right and provide the best support is to listen and speak to the families and ask them about what they need and the hurdles they are facing.

When a family has a baby with such a condition, it is an unforeseen circumstance. They do not imagine that that child will not learn to sleep through the night, will not learn to crawl and walk and will not go through a weening process and begin to eat solid food. It is an unforeseen and unforeseeable situation. A lot of the conditions that such children have are totally unplanned for and could not have been predicted beforehand.

One thing that has been touched on, but not explored in a huge amount of detail, is the financial impact on families. My hon. Friend the Member for Lanark and Hamilton East (Angela Crawley) mentioned that 25% of families with children with life-limiting conditions live in the most deprived areas of our communities. Those families start from a position of not having a huge amount of money in the bank, and they are then faced with a situation in which more than 60% of mothers and more than 20% of fathers have to stop work. They require support from the Government, because it is impossible for them to survive otherwise.

[Alison Thewliss (Glasgow Central) (SNP)]

My hon. Friend is making an excellent case. I visited the Children’s Hospice Association Scotland, and it said that some of the families that it deals with are not even aware of the benefits they are entitled to and get support on that from CHAS. Could the Government do more to encourage people to take up the benefits they are entitled to for their children?

[Kirsty Blackman]

I absolutely agree; that is something that the Government could do better. Again, that is not just the Westminster Government; it is an issue for Governments across the UK. It is very difficult when a family is suddenly thrown into a situation where they have a child who requires an incredible amount of support. They are trying to find out about children’s hospices and medical support and trying to work out what condition their child has. They are trying to swim through all that while keeping the family financially afloat. If the Government have not been proactive in providing and signposting all that support, it is even more difficult for families already dealing with an incredibly difficult situation. As the hon. Member for Colne Valley (Jason McCartney) said, in a lot of cases they have to do it with next to no sleep. The situation is almost impossible, and it is incumbent on us to ensure that we do all we can to help those families.

I want to touch on a couple of other points that Members have mentioned. The hon. Member for Eddisbury (Antoinette Sandbach) mentioned the importance of families having a break and respite. I underline the point made earlier that children’s hospices are not like adult ones. They provide support from diagnosis, or from the time when it is realised that the child may not survive childhood. Some 75% of the support provided by children’s hospices is through short breaks. We cannot overstate the difference between adult hospices and children’s hospices. There is a requirement that the Government provide them with different levels of statutory support, because they are a totally different kettle of fish.

The children we are talking about have 24/7 care needs, as a number of Members have mentioned. The importance of respite care cannot be overstated. The hon. Lady and the hon. Member for Strangford (Jim Shannon) mentioned sharing the knowledge we have of best practice in the devolved nations and spreading what works. One problem we have in Scotland is the lack of children’s hospice care. We have only two children’s hospices in Scotland, and they have a total of about 15 beds. Families in my constituency have to do a 200-mile round trip to access a hospice, and that is on the weekends that work for the hospice, because there is such a big waiting list. I do not think that is appropriate. We need to work on that. In previous years and decades gone by, it was not necessarily so much of an issue, because there were fewer such children and families. It is now increasingly becoming an issue. That is why Charlie House in my constituency is working hard to get a hospice built in Aberdeen so that there is local access. As my hon. Friend the Member for Lanark and Hamilton East said, the Scottish Government are committed to trying to ensure that we have a geographic spread of services, as well as the spread of services needed for children with all the different conditions.

I appreciate the fact that we have had this debate so that we can discuss these matters, and I appreciate the feeling in the room about working together to try to find a way forward that helps everyone.

One point I will briefly mention, because it has been mentioned a number of times, is the issue of transport for those aged nought to three. That would be relatively easy for the Government to fix and would make a massive difference to the financial impact on families, particularly those who are struggling financially as it is. It would be a massive help.

Thank you, Mr Percy, for your chairmanship, and I once again thank the hon. Member for Pudsey for securing the debate.

Junior Doctors: Industrial Action

Kirsty Blackman Excerpts

Thursday 24th March 2016 Commons Chamber

[Ben Gummer]

My right hon. Friend raises an important point. I believe that the legality of the action is correct and that the BMA is within its rights to do as it is doing, but that does not change whether it is right or wrong. Many junior doctors who may have supported the BMA in the withdrawal of elective care will be profoundly worried about that escalation.

[Kirsty Blackman (Aberdeen North) (SNP)]

It is disappointing that, as both the Minister and the shadow Minister pointed out, negotiations are not currently ongoing. Junior doctors are rightly concerned. The Secretary of State has promised that more junior doctors will work at weekends, while, at the same time, no fewer will work during the week. The UK Government decided this week that the best way to reform disability welfare payments is to listen to disabled people. Will the UK Government now make a similar U-turn on NHS reform and concede that the best way to reform the junior doctors contract is to listen to junior doctors?

[Ben Gummer]

I thank the hon. Lady for her question, but I suggest that listening to junior doctors on their need to have a better work-life balance, to ensure that the contract is safer for patients and to address their legitimate complaints about the way the existing contract works is significantly different from listening to the junior doctors committee, whose actions seem to have ulterior motives. All I would say is that we have listened consistently to the concerns of junior doctors both through the negotiators they have appointed and in relation to those they have raised on the ground. That is why we have come to an agreement on 90% of the contract.

Many of the issues settled within the contract were not requested by the BMA. For instance, one of the complaints made by junior doctors for many years is the fact that they have to book leave so far in advance that they often have to miss important family events. We sought to change that, and we did so in the new contract of our own accord. It is one of myriad changes that will make this contract better for junior doctors. That is why the sooner they have it in front of them—we are working very hard to make sure that happens soon—the sooner they will see that this contract is better for them and that they have been misled.

End of Life Care

Kirsty Blackman Excerpts

Wednesday 2nd March 2016 Commons Chamber

[Kirsty Blackman (Aberdeen North) (SNP)]

Thank you, Madam Deputy Speaker, for allowing me the opportunity to speak in this debate, during the second day of our consideration of the 2015-16 estimates. This is the fourth of our estimates debates and it is on end-of -life care. Supporting an individual at the end of their life is a difficult experience for all involved, be they family members, friends or healthcare workers. Health and social care services play a vital role in making palliative care as dignified as possible, and in ensuring that the patient’s wishes and needs are taken into account. The Liaison Committee has recommended that this important subject be debated today as part of the estimates process.

The Scottish Parliament is partly funded by a block grant. The change in this block grant is determined every year by the Barnett formula. In simple terms, the Barnett formula looks at the change in each Department’s funding in England for that year, and applies either an increase or a decrease in the level of funding that Scotland receives. The calculation takes into account the level of devolution of each Department, and allocates Scotland a population share on that basis.

The Department of Health, as it relates to end-of-life care, has a 100% comparability percentage when it comes to the calculation of Barnett consequentials, which means that any change in the departmental expenditure limit will have a full population share effect on the block grant for this area. Naturally, I was looking forward—indeed, I was on the edge of my seat—to scrutinising the changes that the Government were making to the budgets for end-of-life care. I picked up HC 747, “Central Government Supply Estimates 2015-16”, and flicked speedily to the Department of Health section on pages 97 to 112. Members can imagine my shock and disappointment when I found that the words “end-of -life care” were not mentioned anywhere in the booklet. It is a bit surprising considering that it is 736 pages long—one would have thought that end-of-life care would have appeared somewhere.

Then the Order Paper came out. Hurrah, thought I, this is my opportunity, because it mentioned a number of documents associated with end-of-life care. I thought that I could look at the budget in relation to end-of-life care and see what the knock-on effect would be for Scotland. I picked up all the various documents, but found that none of them lays out the budgetary spend, or the saving, associated with the changes. The documents do tackle major issues of great importance in relation to end-of-life care in NHS England. They highlight both the strengths and the weaknesses in current end-of-life care provision and lay out the UK Government’s plans to make changes, but they do not lay out the budgetary spend or saving associated with any of those changes.

End-of-life care is important to those many families and individuals who are struggling to come to terms with bad news, navigate the health and social care systems, ensure appropriate support is in place for themselves and their loved ones, and make plans and take decisions that they never dreamed they would have to make. It is important that Parliament ensures that end-of-life care is funded appropriately. I know that many Members want to talk about the issues that have to be faced and the ways to solve them—or at least how to alleviate the suffering a little for these families and individuals—but it is nigh on impossible for Parliament to provide appropriate scrutiny of the funding when we are not provided with the budgetary costs associated with the plans.

I want an increased spend in the Department of Health budget as it relates to end of life care, but I am struggling with these documents, as I cannot discover how much is currently being spent on it. Also, I am not allowed to table an amendment that proposes to increase Government spend in this area. If I desired to amend the total net budget of the Department of Health, which is £25,869,317,000, my only option would be to amend the budget downwards by £1,000. There are no other amendments that I can table in relation to this, so I cannot, during the estimates process, move an amendment to increase the Department of Health budget in relation to end-of-life care or to anything else and, consequentially, the Scottish block grant.

I am very pleased that we are discussing this vital and difficult issue, but I am distressed that we are not able to discuss in any detail the funding of this area, which is becoming increasingly important as our population ages.

National Breastfeeding Week

Kirsty Blackman Excerpts

Wednesday 24th June 2015 Westminster Hall

[Kirsty Blackman (Aberdeen North) (SNP)]

I want to speak particularly about the asks that my hon. Friend the Member for Glasgow Central (Alison Thewliss)—I want to say Councillor Thewliss—mentioned.

My situation is similar to my hon. Friend’s. My children are not that different in age to hers and I was also a councillor when I had both my children. I was lucky to be able to go back to work so quickly and to take my children with me. That worked well for us in terms of breastfeeding.

My second child was an absolute dream to feed. She was wonderful and knew what she was doing from day one. She was just a dream come true. However, it was still painful at times. Even in the most ideal circumstances, breastfeeding is not plain sailing all the way. My first child was a nightmare to feed. We had a horrendous time. Nearly all the things that can go wrong with breastfeeding went wrong. My son was re-admitted to hospital at five days because he was not gaining weight, so for a while we had to pump exclusively and then he was weaned back on to breastfeeding.

The support networks and breastfeeding cafés, which hon. Members have mentioned, are so important. There are proven statistical outcomes from breastfeeding cafés and people having physical support. I am not sure whether hon. Members are clear about how the outcomes are achieved. My hon. Friend mentioned the huge online support network, including Mumsnet and Facebook groups. Those places are good and people can get a huge amount of information from others there, but that does not compare with having somebody physically present who knows what they are talking about. In those early days, when people do not know what they are doing, and when their baby does not know what they are doing, they need somebody there to help and show them what they are doing wrong, or what they are doing right, and to explain it. It is not something that can be learned from a video on the internet, because every mum and every baby is a different shape and every baby reacts differently. Somebody must be physically there, and they must have huge experience and know what they are talking about.

A three-day training session on breastfeeding does not, in many cases, equip a midwife or health visitor with adequate means to provide mums with all the support they need. Those people also need experience behind them: they need to see many babies breastfeeding and speak to lots of people before advising in all cases.

In terms of the support available, the Government in Scotland and the Government here—Governments all over the place—need to think about the voluntary organisations providing support. People who have been through breastfeeding and experienced the problems—and those seeking support—are getting involved in the La Leche League and with NCT breastfeeding support, for example, to help people. When I was being shown what I was doing wrong, those were the people I found most helpful, because they knew what they were talking about. Training systems are a great idea, but we need to make sure that voluntary groups and breastfeeding cafés, which have experienced staff, are kept going. If we lose that experience, we cannot get it back. We need to keep these groups going to keep up the breastfeeding rates.

There is a postcode lottery in terms of support. People without a local support group near them have either to travel a long way to get to a group or rely on the internet. That is not ideal.

The World Health Organisation guidelines suggest breastfeeding exclusively up to six months and that breastfeeding onwards to two years or beyond is desirable, advised and good for children and mothers. This is not widely known in the UK: people even get funny looks when breastfeeding a child over six months. People do not understand that that is actually good and has health benefits.

I breastfed my children for a total of three years—adding them both together—so I had that experience of breastfeeding a child who is running around. That is totally shocking for so many people and it should not be, because World Health Organisation guidelines and statistics suggest that there are health benefits from breastfeeding. There is a job of work for all of us to normalise breastfeeding and to explain it to people. If people say, “What are you doing?”, we should explain to them, “This is right. This is not in any way unnatural. This is totally the right thing to do and has benefits for everybody.”

My hon. Friend the Member for Glasgow Central mentioned formula milk and the way it is advertised and classified. I spoke to some of my online friends who have been involved in supporting people with breastfeeding, and one of their biggest concerns, and one of the things that makes them most angry, is the advertising of follow-on milk. Follow-on milk is allowed to be advertised because it is not aimed at mothers with babies, and the adverts for follow-on milk have very small babies who are obviously just six months old. That is the way that the companies can get round the rules, because they are not advertising to mothers with a baby who is under six months; they are advertising to mothers with babies who are older than six months. Before the ban on advertising baby milk was introduced, there was no such thing as follow-on milk; the companies have just invented it so that they can still advertise. That is a concern.

We should have formula, and women who choose to formula-feed—or women who end up formula-feeding not by choice—need to have options in terms of formula. But formula should not be pushed at every opportunity by the companies, and we should not allow them to do so. We should try to avoid that situation.

The last thing I wanted to mention was the pressure to breastfeed. It is very positive that we are promoting and encouraging breastfeeding, but there is a fine line; some women feel that they cannot give up breastfeeding in the very early days without experiencing a huge amount of negativity. Breastfeeding is hard for some women at the moment, particularly when the support is not there nationally.

I have heard of women who have said that not being able to breastfeed caused them to have post-natal depression. The issue was the expectation—that they felt they had to breastfeed, but nobody was there to support them. What they wanted was somebody to show them what to do and to help them, and not having that help is costing the Government and the devolved Administrations through the outcomes for those babies, as they are more likely to cost the NHS more in later life; through the outcomes for the mothers; and through the outcomes for some mothers who really struggle with having to give up breastfeeding, and end up in the mental health system as a result. That really concerns some of my friends and some of the other people I have spoken to about the issue.