Motor Neurone Disease (Care Charges)
To ask the Scottish Government what steps it is taking to ensure that people with motor neurone disease are not charged for care. (S4T-00744)
The Scottish Government is clear that people who are terminally ill should not be charged for care at home. We are working closely with the charging guidance group of the Convention of Scottish Local Authorities to ensure that that is the case for everyone in Scotland and that there is consistency across all local authorities. We want to ensure that everyone who requires care has access to the highest standards of care in every setting, including their own home or a care home. We are integrating health and social care to provide a more responsive and joined-up service for all those who require care.
Do we not have a pattern here? If a person is in a hospice or a hospital, terminal care is undoubtedly and without question free. In the community, there is currently a postcode lottery of charging, which has been exposed by the recent MND Scotland survey, because there is no clarity in the existing guidance on what constitutes terminal care. The lottery is made even more unfair by differences for different age groups.
With all those dividing lines making things worse, does the cabinet secretary agree that South Ayrshire’s definition is especially problematic? Is it not simply unacceptable to require it to be determined that someone has four weeks to live before they get free support? As a doctor, I could not make such an arbitrary judgment. Will the cabinet secretary rapidly establish clarity with COSLA? Can he give us a timetable for when that information will be issued? What monitoring will then take place to ensure that all those with terminal care receive the care that he and I would wish them to receive?
First, I will gently correct the member. I think that he is referring to East Ayrshire, not South Ayrshire. However, I agree with the general gist of the member’s remarks. There is far too wide variation between councils in how the policy is being applied.
The member will remember that, back in 2002, rather than laying down central charging by statute or secondary legislation, the Administration at that time agreed that COSLA would work with councils to try to get as consistent an approach as possible. We have carried on with that policy. I have made it absolutely clear to COSLA that I am not happy with how terminally ill people are currently being charged or with the wide variations between councils, as highlighted by the situation in East Ayrshire, which the member mentioned. COSLA is working at that through its charging guidance group.
I make it absolutely clear that, if agreement cannot be reached and we cannot get the problem tackled by councils on a voluntary basis, I am prepared to use what reserve powers I have to ensure that it is tackled, as the current situation is not acceptable.
I welcome the further elucidation by the cabinet secretary and his correction—I give my apologies to South Ayrshire in that regard.
Will the situation not get worse, despite the cabinet secretary’s undertaking to use reserve powers if necessary? In England, there are currently 59,000 fully funded national health service continuing care patients. That includes people who are terminally ill. Those are patients in the community only, as continuing care in England applies only to the community. In Scotland, we currently have only 400, not 5,000, as the number would be if the criteria were the same as in England. Does he recognise that, with what will be introduced in April 2015 and the increasing anomalies, which really cannot be fixed by a review here or an agreement there, the MND survey has exposed another of those? Do all the parties now need to seriously consider a major rethink of how we fund the whole system when we join health and social care?
First, I caution against direct comparisons with south of the border, because obviously they do not have free personal care there and about 77,000 people in Scotland benefit from free personal care, which the Scottish Parliament unanimously endorsed.
Secondly, as part of the extension of the review of residential care services, I have agreed with COSLA to extend the remit of the working party that carried out the review of residential care to carry out a review of all aspects of care at home, as there are a number of things, including the charging of terminally ill patients, that require modernisation and a simpler and more consistent method so that we do not have a postcode lottery across the country. It is also looking at issues such as 15-minute visits.
I absolutely agree that we need very clear residential care and care at home strategies—each of which relates to the other—and that we need to have those agreed before the formal start date for the integration of adult health and social care on a statutory basis from 1 April next year. The Scottish Government and COSLA are working towards that objective.
This week, Macmillan Cancer Support revealed the results of a survey that showed the unacceptable waiting times for the United Kingdom Government’s new personal independence payments for people with cancer and the impact that that has on their wellbeing. Does the cabinet secretary share my concern that people with motor neurone disease may also be facing unacceptable delays in receiving those payments? Will the Scottish Government approach the UK Government and ask it to halt the further roll-out of the PIP, a benefit that is causing significant anxiety among claimants? Let us not forget that Lord Freud, who was appointed by Tony Blair, brought this situation about and is continuing it.
It is clear that the UK Government’s cuts and changes to the welfare system—including the change from the disability living allowance to the PIP—are causing significant anxiety and distress to people in Scotland. It is unacceptable that some of the most vulnerable people in our society are not getting the support that they need. I believe that the solution is for the Scottish Parliament to have control over welfare. We have made it clear through the white paper that, if we are elected the first Government of an independent Scotland, we will halt the further roll-out of PIPs. That will allow the first Government of an independent Scotland to design a welfare system to meet Scotland’s needs.
I find what is happening to patients with MND deeply concerning and I agree with what has been said already about it. Clearly, from what the cabinet secretary says, this issue would apply to other patients with terminal conditions across the board. Would the cabinet secretary consider hosting a summit meeting and bringing together all the interested parties—not just COSLA but individual councils too, perhaps—to thrash out this issue and seriously try to get something done about it?
I would be more than happy to convene such a meeting, but I think that the appropriate time to do that is once the working party has worked out its recommendations. The working party does not just include the Scottish Government and COSLA; it also includes Scottish Care, the independent sector, third sector representatives and user groups, so it is the appropriate body to work out a set of recommendations on the way forward. I would be more than happy to host whatever meeting we require to build a consensus in this area because it is in everybody’s interests to get a consensus on charging policy throughout the country and within this chamber.
I welcome the cabinet secretary’s acknowledgement that a disgraceful anomaly exists and that he will take steps to ensure uniformity across the country by all local authorities. I do not think that any of us wants a situation whereby a charity has to reveal that some local authorities are refusing to fund personal care for Scots.
Will the cabinet secretary promise to ensure that no terminal patient who requires personal care will ever have to pay for it again? Will he commit in the review to ensure that we know how many patients have been affected by local authorities’ refusal to pay for personal care? Will he also investigate possible compensation packages for affected families and perhaps for those who have already paid for care?
Those are primarily issues for the working party to look into. Indeed, it is up to the working party to quantify the scale of the issue in relation to the actual and forecast number of recipients, as well as to look at the forecast costs and the funding arrangements for future charging policy.
We should make a clear distinction between the formal policy of free personal care, which applies to over-65-year-olds, and the policy of waiving charges, which applies to under-65-year-olds, who do not qualify for free personal care, although people who are terminally ill qualify for free personal care in the formal sense as well. It is the application of that policy that has been the subject of most controversy in the very useful survey carried out by MND Scotland. We should all take that to heart and ensure that, by the time we get to the integration of adult health and social care, we have as our objective a saner and more consistent and fair regime for all charging policy in relation to all aspects of social care throughout Scotland.