10 January 2019

S5M-10559 End-of-Life Carers Support

Deputy Presiding Officer (Linda Fabiani): The next item of business is a members’ business debate on motion S5M-10559, in the name of Mark Griffin, on the report by Marie Curie and Macmillan Cancer Support, “Getting it right for carers supporting someone at the end of life”.

Motion moved,

That the Parliament welcomes the new report by Marie Curie and Macmillan Cancer Support, Getting it right for carers supporting someone at the end of life; notes that the report found that too many people caring for someone at the end of life are going unidentified and unsupported, carers supporting someone at the end of life without support are at risk of falling into crisis and a breakdown of care, the decline towards end of life and death can often be rapid, sometimes quicker than expected, and that the support needs of carers can be very high at this time; further notes that the report sets out that carers need to be identified early, need good care co-ordination and information to support them in their caring role, need respite and/or replacement care to give them a break, and that more needs to be done to identify those in caring roles, especially those caring for someone at the end of life and particularly by those in primary care roles, such as GPs and district nurses, and recognises the report’s recommendation that all those caring for someone at end of life, including those in Central Scotland should have their needs assessed quickly and a plan put in place to support them.

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Stewart Stevenson (Banffshire and Buchan Coast) (SNP):

I thank Mark Griffin for the opportunity to debate this important subject. Equally, I thank Macmillan in a personal capacity as someone whose family has benefited, as have so many others, from its support over the years in circumstances of terminal illness.

Given that I am statistically closer to death than anyone else present in this debate, it is worth my saying that death is the last great taboo. Therefore, we often do not engage with the idea of death and the necessity to prepare for it in a way that would support to an adequate extent the person who is departing and those who care for them. That lack of recognition is part of the issue.

I make the minor observation that one thing that has not emerged in the debate, which slightly surprised me, is the role of faith communities in supporting families of terminally ill people. The visit from the priest, pastor, minister or elder of the church can often be a very important part of the support before death and the bereavement process after death to which Mark Griffin and Monica Lennon referred.

As a GP’s son, I am aware of the conventional view of bereavement that there are five phases and that, basically, it lasts six months. As Monica Lennon and Mark Griffin said, it is important that there is support for people in that time. It does not matter how unexpected a death is or how long-anticipated it is—it is a shock when it happens, and bereavement support for the carer is very important indeed.

Modern medicine has created particular problems in this regard. People survive after diagnosis of a terminal condition much longer than they used to. They might survive with comorbidities; people might have many different conditions and a complex set of needs and require support from the medical profession. In that sense, we create a problem for the system of supporting carers.

We expect more of carers, given those comorbidities, and we expect longer-term support because of the generally longer survival times after diagnosis. Therefore, this whole issue has become more important than it ever was.

We cannot start early enough to help people to understand the process of death and bereavement. This might sound quite trivial, but that is one of the reasons why it is quite important for children to have pets—it confronts them with the idea that nothing in life is forever, because pets tend to die, and that is as true of us as it is of our pets.

I hope that this debate makes its own modest contribution to engaging us with the idea that death is normal and natural. Indeed, it is important that we move out of the way to allow the next generation to come through.

Macmillan’s study is a very valuable contribution to understanding the pressures on carers and the support gaps that we need to address. As a rural MSP, I point in particular to the difficulties in reaching people in rural areas and in identifying carers there. In those areas, people are more likely not to be identified and to lack support.

We can never thank Macmillan too much; I do so again.


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