4. Ms Patrycja Pasternak

MS PATRYCJA PASTERNAK (sworn).

Lady Hallett: I’ll just explain to people, we have asked for Dr Elder-Woodward’s assistant to be sworn in, just in case she has to help in any way with any communication issues.

The Witness: Thank you, my Lady.

Lady Hallett: Not at all.

Questions From Counsel to the Inquiry

Ms Arlidge: Thank you very much.

Dr Elder-Woodward, you have provided two statements to the Inquiry, one in your capacity as co-convener of Inclusion Scotland and a supplementary personal statement. The reference for the Inclusion Scotland statement is INQ000371664. Hopefully you will see that on your screen in front of you, and it will be a familiar document to you.

Ms Patrycja Pasternak: Yes.

Counsel Inquiry: On page 23 of that, you’ve signed that statement on behalf of yourself and Inclusion Scotland, haven’t you?

Ms Patrycja Pasternak: Yes.

Counsel Inquiry: You have also provided a supplementary statement. The INQ reference, I’m afraid I do not have to hand immediately but we’ll have it in a moment, and that is a personal statement in which you exhibit a number of documents setting out your own personal lived experience of the pandemic; is that right?

Ms Patrycja Pasternak: Yes, that’s right.

Counsel Inquiry: We’ll be looking at both aspects of that in the course of your evidence today. In the course of your evidence if there’s anything that I say that is not clear, please do just ask me to repeat myself. Of course if there’s any elements that you would like your assistant to help you with, please do so.

If we turn first to your personal experiences of the pandemic, if we may. You suffer from – sorry, you were, until 1999, a senior social work officer at Glasgow City Council; that’s right, isn’t it?

Ms Patrycja Pasternak: Yes.

Counsel Inquiry: During your time with local government, were you involved in establishing indirect and direct payments into –

Ms Patrycja Pasternak: Yes, I was.

Counsel Inquiry: Did you also assist in the development of the Glasgow Centre for Inclusive Living?

Ms Patrycja Pasternak: Yes, I did. Yes.

Counsel Inquiry: So you therefore had quite the experience of dealing with bureaucracy and accessing services, because you’d been your own – you’d done that for other people as well, hadn’t you?

Ms Patrycja Pasternak: Yes.

Counsel Inquiry: You retired, of course, long before the pandemic started, but you, as part of your needs, had a package in place for support; is that right?

Ms Patrycja Pasternak: Yes, it was a 24-hour package.

Counsel Inquiry: 24-hour –

Ms Patrycja Pasternak: Day and night.

Counsel Inquiry: With personal assistants assisting you for the whole

Ms Patrycja Pasternak: Yes. I’ve got a team of five part-time personal assistants who I manage myself.

Counsel Inquiry: Effectively you’re given a sort of budget to employ assistants to cover your needs within that budget?

Ms Patrycja Pasternak: Yes, and Patty’s one of them.

Counsel Inquiry: Yes. When lockdown came, two of your personal assistants were unable to continue assisting you, due to their own personal circumstances; is that correct?

Ms Patrycja Pasternak: Yes, that’s right.

Counsel Inquiry: In terms of having control of the budget for employing those personal assistants, how did that cause difficulties for you?

Ms Patrycja Pasternak: Well, to begin with, I didn’t know where the money would come from to pay for their self-isolation, because I had to find additional support. I also cut the hours of support because there was insufficient support available.

Counsel Inquiry: So –

Ms Patrycja Pasternak: I was fortunate enough to receive support from the Independent Living Fund. I don’t know if you’ve heard about that but it’s a fund whereby people receiving money from their local authority can go to the Fund for additional money. And although I wasn’t receiving much,

I did receive support from my local authority, the Fund hours a day? was able to give me more money to pay for the furlough of the people taking self-isolation. Did that answer the point?

Counsel Inquiry: So when you, having reduced your own personal assistant support, you effectively had to seek assistance elsewhere to try and maintain some level of support that would keep you safe –

Ms Patrycja Pasternak: Yes.

Counsel Inquiry: – and keep you as healthy as you could be?

Ms Patrycja Pasternak: Yes.

Counsel Inquiry: In circumstances where you were responsible for employing your own carers – sorry, personal assistants, and having to put two on furlough or statutory sick pay, did that in itself cause you stress and concern and extra workload at quite the time when you didn’t need it?

Ms Patrycja Pasternak: Yes. I’m afraid the person that came in to help, she stole money from me and jewellery from the house, so I was under extreme stress because the police couldn’t help me and I had a bit of a collapse, at which time my nephew took control of my support package.

Counsel Inquiry: And you suffered both sort of mentally and physically as a result of this stress, didn’t you?

Ms Patrycja Pasternak: Yes, I did.

Counsel Inquiry: You were able, as a result of your previous knowledge and your previous role at Glasgow City Council, and as a result of your knowledge and experience through Inclusion Scotland, you’re a very adept, knowledgeable expert in accessing services and advocating for not only your own rights but for those other people who require assistance?

Ms Patrycja Pasternak: Yes, but even so I found it very difficult living with Covid, because everything was locked down, so even I couldn’t find the support I needed. With all my professional and academic contacts, I still couldn’t get the support I needed.

Counsel Inquiry: If I may read from a document you’ve produced for this Inquiry, you say:

“But I often wonder: what about those who may not be so blessed by these resources? What efforts are being made to develop their agency and social networks? Doesn’t this pandemic highlight the need to develop peer advocacy and group identity, peer support?”

Ms Patrycja Pasternak: Yes, that’s been a long campaign on behalf of the movement that we need more peer support, because peer support is much more effective than non-peer support. With peer support there’s empathy and knowledge of the situation of the person.

Counsel Inquiry: If we move, therefore, in that very vein, on to your work with Inclusion Scotland, is it right that you’re the co-convener of Inclusion Scotland?

Ms Patrycja Pasternak: Yes, I am.

Counsel Inquiry: And you have been in that post since November 2023, so after the pandemic, but you have been a board member since 2005?

Ms Patrycja Pasternak: Yes.

Counsel Inquiry: And in that role, you are responsible for various things, including overseeing the governance of the organisation and representing the board at meetings, including with Scottish Government and others; is that right?

Ms Patrycja Pasternak: Yes.

Counsel Inquiry: Just to assist the Inquiry and my Lady and those listening, Inclusion Scotland is a registered charity, it’s a disabled people’s organisation, and it is led therefore by people who have – are disabled themselves or deaf or hard of hearing; is that right?

Ms Patrycja Pasternak: Yes, that’s right.

Counsel Inquiry: So it’s a – is it right to say that it is both a support network for people and an advocacy network seeking to achieve change in government and to represent individuals’ rights?

Ms Patrycja Pasternak: It’s in support of all local disabled people’s organisations. We don’t support individuals.

Counsel Inquiry: No.

Ms Patrycja Pasternak: We support local and national organisations, but we do have two programmes funded by the Scottish Government to support people in employment and to support people to enter the political system when they join political parties or they stand for local or national elections we offer support to people to stand for elections.

Counsel Inquiry: And the focus of the groups within Inclusion Scotland, the operational focus of Inclusion Scotland is disabled people within the community rather than, for example, in residential care homes and the like?

Ms Patrycja Pasternak: In the majority, yes.

Counsel Inquiry: Inclusion Scotland, would you say, worked closely with Scottish Government and others throughout, prior to the pandemic, as an advocacy service and a representative service seeking to influence policy in government?

Ms Patrycja Pasternak: We found the engagement very open.

Counsel Inquiry: And you found that there was a level of proper access and two-way dialogues; is that fair?

Ms Patrycja Pasternak: On the whole. The government isn’t one entity, it’s different departments and several people within the departments, but we had some good relations and some not so good relations within the government, if that’s understood.

Counsel Inquiry: It’s no doubt part and parcel of the enormous machinery of government that’s –

Ms Patrycja Pasternak: Exactly.

Counsel Inquiry: And as part of the engagement with government – sometimes good, sometimes less good – part of that was Inclusion Scotland actively seeking to inform government – different parts about different things, no doubt – about things such as structural discrimination, barriers to access on the part of disabled people and the denial, you say in your statement, of human rights that disabled people face?

Ms Patrycja Pasternak: Yes.

Counsel Inquiry: In your witness statement, for the corporate statement, you set out a number of references, for example, to the UN Committees, and is that the sort of thing, with international knowledge brought to bear and informing the Scottish Government about that, Inclusion Scotland were keen to ensure was happening?

Ms Patrycja Pasternak: We have links with our colleagues in Europe as well as internationally, so there is an international movement of DPOs, a European network of DPOs and a Scottish network of DPOs and we have links with all three.

Counsel Inquiry: So you could bring those networks together to influence and inform Scottish Government of –

Ms Patrycja Pasternak: Yes.

Counsel Inquiry: – matters.

You say in your statement at paragraph 9 – I’ll just read it out, because I think it’s an element of your statement that you’re particularly keen to draw out:

“Going into the pandemic, disabled people did not enjoy the human rights set out in the UN Convention on the Rights of Persons with Disabilities. Instead, disabled people already experienced unequal outcomes and lacked the support and resilience to deal with such an emergency. It was transparently clear that this was compounded by the negative impacts of Covid-19 and core decisions taken by Scottish Government.”

Ms Patrycja Pasternak: Yes.

Counsel Inquiry: Is that something that you found particularly important to bring out?

Ms Patrycja Pasternak: Yes. Pre-pandemic, disabled people were in a dire state of not being supported by the community, not supported by the government, having their benefits reduced, having their social care reduced and the reduction of services in the austerity period. We were in a crisis situation pre-pandemic.

Counsel Inquiry: And those, that crisis was multifactorial, wasn’t it? So there would be issues about access to suitable housing, accessible housing?

Ms Patrycja Pasternak: Yes.

Counsel Inquiry: But issues within the home, within people’s homes that exacerbated –

Ms Patrycja Pasternak: Yes, some people couldn’t even go to the toilet in their homes, the kitchens were inaccessible to other people and they were waiting long, long times to be rehoused. So people were imprisoned even within their own dwellings.

Counsel Inquiry: Even before the pandemic?

Ms Patrycja Pasternak: Even before the pandemic.

Counsel Inquiry: Then the pandemic came along and worsened the situation yet further; is that right?

Ms Patrycja Pasternak: Absolutely.

Counsel Inquiry: Inclusion Scotland carried out a survey in April 2020, didn’t they?

Ms Patrycja Pasternak: Yes.

Counsel Inquiry: So very early on in the pandemic, and you’ve presented – Inclusion Scotland produced a report based on that survey of 800 members, and in that survey, which is – we don’t need to bring this up on screen, but you comment on a couple of the findings in your statement, the reference for the transcript is INQ000366004, and you say:

“Respondents say they felt abandoned, a number reported feeling suicidal, they talked of isolation and loneliness, the impact of the loss of essential social care supported by independent living, difficulties accessing foods and necessities, fears about being denied treatment, and the involuntary imposition of Do Not Attempt Cardiopulmonary Resuscitation.”

Ms Patrycja Pasternak: Yes.

Counsel Inquiry: Both in terms of the survey findings, also these were presumably matters that were being brought to the attention of Inclusion Scotland on an anecdotal basis as well?

Ms Patrycja Pasternak: Yes, and we informed the government of the situation. We got this information from disabled people and we gave it to the government.

Counsel Inquiry: Because in the context of lockdown, as you’ve already described in your own personal stories, but that your personal story was sadly replicated across many other individuals as well, who had issues accessing their personal assistants, they were unable to access, they had their support withdrawn because of lockdown, they had issues accessing medication, washing, food preparation, all things that would ordinarily hopefully form part of a package?

Ms Patrycja Pasternak: Shopping, shopping was a problem as was the emphasis by the government on using digital information, because many disabled people because of their poverty do not have access to the world wide web so the reliance by the government on digital information hampered the knowledge of disabled people.

Counsel Inquiry: So the isolation that existed was compounded, wasn’t it, because of the lack of ability in some circumstances to access the data that was being – or the information that was being provided by the Scottish Government; is that right?

Ms Patrycja Pasternak: Yes.

Counsel Inquiry: Therefore both access to the knowledge of what was happening was an issue but also access to the healthcare generally and support was an issue?

Ms Patrycja Pasternak: Yes, and also the lack of being able to help them in their interpretation of the information, there were no advisory services which could interpret the information to individuals’ own situation particularly those with intellectual disabilities, the information wasn’t in Easy Read, nor were there any facilities, to help people interpret the information to their own situation.

Counsel Inquiry: So it was a dual issue, people couldn’t access the information themselves directly, and because of the withdrawal of support, they couldn’t access the support that they needed to interpret that information?

Ms Patrycja Pasternak: Exactly.

Counsel Inquiry: Turning to sort of some of the other practical impacts on those with disabilities and that Inclusion Scotland speak to, were there issues with, for instance, access to food and medication as a result of the imposition of lockdown and other non-pharmaceutical interventions?

Ms Patrycja Pasternak: That was the case, that was the case in many situations. In others, they felt they had to come out of isolation, come out of the lockdown to go into the community to get aid and support and to get medication. The other problem some people had was they couldn’t get access to the dietary requirements that they needed for their impairment, the availability of special diets was a problem.

Counsel Inquiry: So people with disabilities were having to break shielding, for example, despite their own vulnerabilities, in order to access services because the support that had previously been in place was no longer there, and in order to –

Ms Patrycja Pasternak: Exactly.

Counsel Inquiry: – get their food, their specialist medication and the like, they were having to put themselves at further risk; is that right?

Ms Patrycja Pasternak: Yes, some people reverted to the social media, I’m talking about Twitter and that sort of thing, to find another source of medication in the social media area.

Counsel Inquiry: And then if we look at other aspects that you’ve mentioned in the report – corporate statement, I’m sorry, you talk about the impact on families and education, and you say at paragraph 34 of your witness statement:

“Those caring for disabled children highlighted the impact of the loss of specialist educational support and respite. Parents with disabled children, including parents who were disabled people themselves, struggled with the additional strain of having to educate them at home without the skills or tools necessary. There are an estimated 10,000 children in Scotland with complex additional support needs prior to the pandemic. Many lost some or all of the specialist education and support they relied on.”

So this is a sort of two-fold element to lockdown and schools closing and support being withdrawn, that you say hit those with disabled children particularly hard because they lost both the schooling and the special educational needs support that is inherent in schooling itself?

Ms Patrycja Pasternak: Yes. The lack of schooling, and the lack of support, especially for children with complex needs, particularly psychological needs, that added to the stress of parents because they had to deal with very difficult children 24 hours a day and there was no respite for them.

Counsel Inquiry: Would you say that that was therefore compounded as well, particularly in the physical circumstances of lockdown where –

Ms Patrycja Pasternak: Absolutely.

Counsel Inquiry: – much closer?

You also talk in your statement about the impact of reasonable adjustments on those in the disabled community. For instance, in terms of face coverings, for those people with difficulties – with communication difficulties, if someone was deaf, and relied upon lip-reading, for instance, the presence of face masks of course would cause them greater difficulty in accessing society?

Ms Patrycja Pasternak: That is true, very few people use the plastic masks which were see-through. Those windows in the masks help people who were deaf, and very, very few people even those working with deaf people didn’t use that accommodation.

Counsel Inquiry: You say some frontline service providers refused to step back and remove their mask or to use an alternative means of communication like pens and paper?

Ms Patrycja Pasternak: Yes, that was true.

Counsel Inquiry: So simple adjustments that your organisation found were simply not being made; is that right?

Ms Patrycja Pasternak: Yes.

Counsel Inquiry: Then of course for some people who were vulnerable to the infection with Covid, fear about people not following the rules, did that have an impact on social integration and people being able to access their community?

Ms Patrycja Pasternak: Yes. There were instances where disabled people refused support for fear of being infected, that is the case. There is also the case that Professors Shakespeare and Watson brought up in Module 2, in that people particularly with learning disabilities were housed in group accommodation, which facilitated the transfer of the virus because they were living in close proximity to one another.

Counsel Inquiry: We’ve spoken briefly already about the contact that Inclusion Scotland had with Scottish Government ministers and officials. You say at paragraph 53 of your statement:

“Despite it having been abundantly clear to the Scottish Government that disabled people would be gravely and disproportionately affected by Covid-19, and actions taken to mitigate it, this previously good level of engagement reduced suddenly as the pandemic took hold. This was presumably so that the Scottish Government could reset to deal with the emergency.”

Ms Patrycja Pasternak: Yes.

Counsel Inquiry: How long did it take until Inclusion Scotland became more involved again with Scottish Government?

Ms Patrycja Pasternak: I find it difficult to answer, because it didn’t until after the pandemic. I can’t give an exact time, but it was after the pandemic that we were just beginning to pick up where we were pre-pandemic, and that is still an ongoing scenario, I’m afraid.

Counsel Inquiry: Now, in your statement you talk – you do go through some of the contact you have with Scottish Government. I won’t take you through it. For those who would like to look at it, it’s from paragraph 51 onwards to 101/102. All of those – although the contact with Scottish Government obviously had fallen away and you felt there was less influence, is it fair to say, is it your evidence that despite the fact that you’d – that Inclusion Scotland prior to the pandemic had been closely involved, and despite the offers and the attempts to engage with Scottish Government throughout the pandemic, even in all those circumstances the outcomes were just – didn’t reflect the efforts that Inclusion Scotland had put into improving that – improving Scottish Government knowledge about the particular challenges facing the disabled community?

Ms Patrycja Pasternak: If I may, My Lady, answer that in more broad terms, rather philosophical terms, there is the procedure of engagement whereby the engagement is started and ended by authority, it is up to the authority to decide whether they want to engage or not. We can press them to do it, to talk to us but it is their decision to start and it’s their decision to end. So there’s the process whereby the initiation and conclusion is in the hands of powerful people. Then when the engagement starts, at the beginning of the process and ends is upon them. It is important that we are involved at the beginning and not the end. Then there is the resourcing of us. We need resources in order to engage with the other party. Then there is the audit of their – what is the outcome of our involvement, and that process is very difficult to assess.

Counsel Inquiry: And –

Ms Patrycja Pasternak: Does that answer your question?

Counsel Inquiry: It does.

Do you think that the Scottish Government should have turned more rapidly to the DPOs and Inclusion Scotland when it was clear that the virus was going to change lives and allow you to influence and give your advice and information to Scottish Government?

Ms Patrycja Pasternak: My Lady, we gave them ample opportunity, we gave them ample information, which they could use earlier than when they did, and if they wanted engagement to flourish we need to be involved right at the outset, not at the end of the decision-making process.

Counsel Inquiry: You say in your statement, “We would have informed their draft decision-making about the likely impacts for disabled people and the specific support that would be required before the negative impacts took effect”. Do you say they missed that opportunity?

Ms Patrycja Pasternak: Absolutely.

Counsel Inquiry: You also say at paragraph 108 of your statement:

“The equality unit disability roundtable and the Social Renewal Advisory Board were helpful in this regard but could be classed as too little, too late. Even so, our input was not always addressed to the extent and with the haste required by disabled people.”

Ms Patrycja Pasternak: Yes, that’s why I talk about the audit, there were no audits of our involvement.

Counsel Inquiry: And to the extent that there was engagement, it was too late and it was too –

Ms Patrycja Pasternak: The engagement was too late, and we never knew what impact our involvement was. So we couldn’t ascertain the outcome which could be attributed to our engagement.

Counsel Inquiry: So you never were able to find out whether you were able to – you didn’t see the input that Inclusion Scotland were putting into things reflected in the output of Scottish Government?

Ms Patrycja Pasternak: Well, that’s true generally. There were one or two instances, my Lady, when we could see the outcome, and that was in the £100 million to restart care packages, but there was no audit of where that money went to, there was no transparency about where that money went to, because we didn’t see any care packages being reopened. So although the government were listening to us, the local authority delivery of service was not.

Counsel Inquiry: Turning just finally to the future recommendations that Inclusion Scotland have suggested, they’re at paragraph 111 to 116 of your statement, and do you say that DPOs should be involved in emergency planning?

Ms Patrycja Pasternak: Yes. “There should be nothing about us without us”.

That, my Lady, is our motto, “There should be nothing about us without us”.

Counsel Inquiry: And there are a series of other recommendations, I won’t take you through them, but I’ve just given the reference for the transcript.

Dr Elder-Woodward, is there anything else you would like to say?

Ms Patrycja Pasternak: Just a couple of things. First of all, my Lady, there would have been more resilience to Covid if our socioeconomic rights had been delivered. The fact was that we were bereft of social and economic rights, that made us more, err – I don’t like the term “vulnerable” – more susceptible to the Covid pandemic.

The other thing I wanted to talk about was the DNR. On the DNR, we felt, people felt, that they were not wanted, that society didn’t want them, because they put them on DNRs. That could have been a utilitarian approach to coping with Covid, but we would rather the Commandos’ motto, “Leave no one behind”. If that motto is true of army people under fire, it should also be true of society in dealing with pandemics, “Leave no one behind”.

Thanks, my Lady.

Lady Hallett: Very good motto.

The Witness: Thank you, counsel.

Ms Arlidge: My Lady, there are no CP questions. I do have the reference for the supplementary statement to be read into the record, with your leave. That’s INQ000397354.

Lady Hallett: Thank you very much.

Thank you very much indeed, Dr Elder-Woodward. I’m really sorry to hear some of what you’ve had to say, obviously, but you’ve been really helpful and I’m very grateful to you. Don’t worry if on the journey home you think of something that you wish you’d said. A) I’ve got the written statement, and I take into account all the written material, not just what I hear here in the oral hearings; and also you have the advantage of being represented by very experienced King’s Counsel, Mr Friedman, so he’ll make sure that anything you want to be put before the Inquiry will be put before the Inquiry. So thank you very much indeed for your help.

The Witness: My Lady, could I thank you for giving me the opportunity to come and give evidence.

Lady Hallett: Not at all. Thank you.

(The witness withdrew)

Lady Hallett: Right, I think I have to rise now for five minutes. I think everybody else stays, if they want to stay, and I go for five minutes. I shall return.

(12.15 pm)

(A short break)

(12.19 pm)

Lady Hallett: Mr Dawson.

Mr Dawson: Good afternoon, my Lady. The next witness, there will be two witnesses giving evidence today, Mr Roger Halliday and Mr Scott Heald.