Dr Sally Witcher: My human rights were being effectively trashed

As I leave Dr Sally Witcher’s home, having spent the best part of two hours talking with her, she thanks me for agreeing to wear a facemask “without a fuss”. I brush past it then, but as I head back to the Holyrood office I start thinking about the implications of that comment – that other people have made a fuss about a minor inconvenience that helps keep her safe, well and alive. It’s a small glimpse into all the impossible decisions she and other highly clinically vulnerable people like her have faced over the last three years.

To date this year, Witcher has left her home just twice. Once for lunch with a friend and once to receive an honorary doctorate from the University of Stirling, which she praises for putting in place various safety measures to ensure she could attend the ceremony. Due to her disability and health conditions, Witcher is at higher risk than most other people of a negative outcome from Covid. As a result, while the rest of the country has mostly returned to normal, she has essentially remained in lockdown.

“In a way, it’s not Covid-19 that’s having the impact, it’s the way governments have failed to respond to it and manage it… They have basically offloaded responsibility onto individuals to assess their own risks and take mitigating action if they choose. But then they failed to provide them with the information that individuals need in order to do that,” she says. “There’s no strategy at all that I’ve seen for people at high clinical risk, who’ve just effectively been thrown to the wolves, abandoned.”

Her opinion of the Scottish Government’s approach now is in stark contrast with the start of the pandemic, when she saw it making different choices to the UK Government. “I was so pleased to be living in Scotland, because there was real leadership there from the first minister and other ministers, good communication. And then it just stopped. Mask mandates removed. People were advised to remember to think of the vulnerable. Well, I’m sorry, what that amounts to is the removal of people’s equal citizenship, human rights and equality, and making it contingent on the hopefully goodwill of other people, which absolutely can’t be relied upon.”

And while she accepts that some of Scottish Government decisions are constrained by Westminster, Witcher says the government should either be “using its devolved powers around health to good effect” or at least explaining “why they can’t or why they won’t” take action. But right now, she says, “there’s no acknowledgement that the anxiety you feel is 100 per cent justified and is evidence-based. And there’s this gaslighting that you have inflicted on you that is just unbearable.”

Her anger about the government’s approach was the main reason she left her role as chair of the Scottish Commission on Social Security, an independent body set up to scrutinise the new welfare system in Scotland. Witcher was the commission’s first chair and was meant to remain in post until January this year. As it was, she resigned last summer.

“I really still 100 per cent back what the Scottish Government is trying to do around devolved social security and I think the role of the commission is a really important one,” she explains.

“I was not under any pressure – in fact quite the opposite – to leave that role. But it was me feeling very uncomfortable with trying to deal with, on the one hand, being very, very critical about one area, whilst on the other, being very supportive, and finding that hard to deal with.

“Part of what the commission is charged with is effectively tracking and reporting on whether draft regulations conform to human rights. Meanwhile, I was in a position where my own human rights were being effectively trashed.”

She recalls one moment where she was giving evidence to the Scottish Parliament’s Covid-19 Recovery Committee. She was there in a personal capacity, not a professional one, but nonetheless she was accidentally introduced as chair of the commission. That sort of thing can, she says, quite easily happen – and what she did not want to do was damage the good work the government was doing on social security.

Now she’s in the process of setting up a new social enterprise, Inclusive New Normal, which will be challenging the government to make environments safer for all. She explains: “Frankly, when you’re in a position like mine, life feels pretty precarious and short, potentially very short, and it’s not melodramatic, it’s just factual. You want to be spending your time where you feel it is most important to be spending it and I, at that point, felt that that’s where I needed to spend it. That was the key reason. There were other factors, of course.”

Witcher goes on to detail some issues in the way the commission was set up and the length of time it can take to push through actions – “things like setting up a website, which took three and a half years” – but she is confident the next chair won’t have the same challenges thanks to improvements she made, including a governance review.

Some of these initial problems she puts down to there being “no blueprint” for the commission to follow because it was such an innovative and new way of doing social security.

“The Scottish Government has rightly taken time over this, under massive pressure from opposition politicians to go faster. But I’ve seen too often where governments have gone too fast and it’s the recipients, the claimants, that pay the price of that. If it’s a mess, if they don’t get the money when they should get the money, it’s them that end up suffering.”

But one area of concern recently is the lack of a cabinet secretary or junior minister within the Scottish Government now with specific, named responsibility for social security. At the launch of Social Security Scotland, Shirley-Anne Somerville was the Cabinet Secretary for Social Security. Following a reshuffle in 2021, responsibility went to Ben Macpherson as Minister for Social Security and Local Government. Under First Minister Humza Yousaf, no such role exists – social security instead sits under a wider portfolio, with Somerville as Cabinet Secretary for Social Justice.

“I find that really odd, personally. On the plus side, it falls within Shirley-Anne Somerville’s responsibility… That’s useful. She will know her stuff on that, she will have a very, very good grounding on it which is great – but it’s a massive, massive role. And I suppose what I’ve seen is that you start off from it being a cabinet post, Cabinet Secretary of Social Security, it then becomes a bit of a junior minister’s post – happily a good junior minister, but still a ministerial post that combined that with local government, both of them absolutely vast, and not necessarily particularly complementary.

“It did enable a level of engagement, possibly at a greater level of detail, than perhaps a cabinet secretary post. You need both that strategic level, plugging into everything else that was going on and seeing how social security intersects with other areas of policy, but you also need a really tight focus on some of the incredibly important detail, and relations with the DWP, obviously, are critically important as well. I was surprised at that time [in 2021] that it wasn’t named as part of the cabinet secretary post, but in the end it seemed to work out. We’ve been blessed with good ministers.

“But I was surprised [by the recent reshuffle]. There’s still a lot to be delivered. We’ve got carers for starters, there’s industrial injuries, and then there’s going to be all the ongoing stuff.”

One of the reasons Witcher took the role as chair is because of her own personal experience claiming for entitlement. She describes the process for claiming Disability Living Allowance as “absolutely nightmarish”, and while she managed to get PIP – which has since replaced DLA – fairly easily, the process was still “horrible”. “I can’t overstate how much it matters that people are treated with dignity and respect,” she says.

“Lived experience is so important on this. I always say that if what you’re attempting to do doesn’t work for the people you’re attempting to do it for, you’re wasting your time and possibly what you’re doing is counterproductive. You’re wasting money as well, because you’re spending resources on things that just don’t work. If you actually ask the people on the sharp end, they’d have told you ‘don’t do that, because it isn’t going to work and this is why’. And then you could have done something else, work with them to find something that would work.”

In Scotland, this idea of co-designing the system with disabled people is written into the Social Security Charter and so far it seems to have worked in creating a much more accessible system.

But processes are not the only important element. Another is the cash itself. Witcher highlights that some groups in society are living in “dire poverty”, only made worse by the cost-of-living crisis. “Benefits are not keeping up,” she says. “They might have upgraded them, as indeed they did, in line with inflation but the starting point was far too low – not close to adequate.”

She reels off a number of statistics off the top of her head: that nearly half of people living in poverty in the UK are either disabled or live with a disabled person; that living costs for the average disabled person equate to £632 extra a month; that one in five disabled people have to spend more than £1,000 a month extra on essentials.

“We’ve known for decades the areas of extra costs that disabled people have and why they have them. Those things haven’t gone away, those haven’t changed. What’s happened is that the amount of expense the cost-of-living crisis is going to increase is going to increase disproportionately for disabled people.”

The biggest costs, she explains, are transport, energy and food. She continues: “It is important to understand that some of these costs are to do with health conditions, but some of them are to do with discrimination. If you acted on things like transport, if you did more things around employment… there’s things that could be done. It is disabled people that ended up paying for externally imposed discrimination, because they are forced to live in houses that aren’t suitable, they have to have more help because they can’t do things, get around the house, they can’t get out. They need paid assistance. There’s all sorts of things. All of that is why I think, for disabled people, this [cost-of-living crisis] is absolutely disastrous.”

And on top of that, disabled people are also having to account for the continued practical costs of pandemic protections. “Disabled people are not necessarily all more vulnerable to Covid, but quite a lot are, and not being able to access things like free testing, masks are expensive… There’s a whole tranche of new costs. If public transport isn’t safe because mask mandates have been removed, do people have to use taxis because they’re safer? Are people going to be deterred from using assistance services if they think that the people assisting them could have Covid? Are they going to be deterred from going to hospital? There’s evidence to show that they are. That’s going to cause more health issues and that’s in turn going to have more costs attached, more assistance is needed and so on. It’s a perfect storm.

“I was asked the other day whether things had improved for disabled people. I’ve been working in different roles in this area for many years, and I said, there been times where it has gone forward, there has been progress. And there have been times when it’s gone back again. And right now, I think it’s gone back again. And I would say that some of the attitudes that have come out through the pandemic towards disabled people, people with health conditions and older people, have been the kind of thing that disabled people have often experienced at some level, but rarely so blatantly… I’ve never seen it so writ large, so undeniable.”