JCHR and EHRiC Evidence - Advocates and Campaigners

The UK Parliament's Joint Committee on Human Rights (JCHR) is currently holding an inquiry into the UK Government’s response to Covid-19. This inquiry is looking at how people's human rights may have been affected.

At BIHR we are gathering evidence for both inquiries from people and their families accessing care and support; advocacy and campaigning organisations and people working in health and care. This survey is for advocates and campaigners. The other two survey links can be found at the end if you would like to share these and help amplify more voices please do.

The Scottish Parliament's Equalities and Human Rights Committee (EHRiC) is also currently conducting a survey into the impact of the COVID-19 pandemic on equalities and human rights. If you are in Scotland we will use your responses in our submission to the EHRiC.

We have put together the survey questions below to help us to do find out how Covid-19 has impacted the people you support.

You can complete the questions below. All the questions are optional, so you do not have to answer them all if you do not want to. All your answers are anonymous, we cannot trace these back to people.

Thank you for taking the time to help us ensure people's real life experiences are part of the evidence to the JCHR (and the EHRiC in Scotland).

Please note that we can’t provide legal advice or support to individuals. If you need help for your situation you can find more information on groups to contact here.

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* 1. What group of people do you support? Choose any/all which apply

Adults with physical disabilities and/or health care needs

Older people with physical disabilities and/or health care needs

Children with physical disabilities and/or health care needs

Adults with mental health needs

Older people with mental health needs

Children with mental health needs

Adults with learning disabilities and/or Autism

Older people with learning disabilities and/or Autism

Children with learning disabilities and/or Autism

People with experiences of abuse

Other (please specify or add further detail)

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* 2. What is your job/ voluntary role?

A formal advocate (e.g. IMCA, IMHA, etc.)

A self-advocate

A member of a community group

A member of an advocacy group/organisation

A member of a campaigning group/organisation

Other (please specify)

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* 3. Where do you work?

UK Wide

England

Northern Ireland

Scotland

Wales

ABOUT THE EXPERIENCES OF THE PEOPLE YOU SUPPORT DURING COVID-19

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* 4. We have been made aware of lots of issues with care and support during Covid-19. The question looks big because we want to make it easier for you to tell us about any issues the people you support have experienced.

Please be aware that this question includes descriptions of distressing issues which you may not want to read. You do not have to answer this question if you do not want to.

Have you been made aware of the people you support experiencing any of the following since the outbreak of Covid-19? Please tick all that apply:

Do Not Resuscitate Orders put in place or pressure to make them without being involved in the decision

A failure to protect life due to lack of resources, cuts to services or decisions to prioritise other services

Failure to test for Covid-19 before admission to residential care leading to spread of infection and death

Removal or change to care or support packages leading to situation where dignity cannot be upheld

Being moved or detained in an inappropriate place due to a shortage of beds or community support which has a severe impact on mental and/or physical wellbeing

Being subject to abuse, neglect or bullying in a person's living situation with no way to address these during Covid-19

Being prevented from leaving the place they live without alternatives set up to maintain mental and/or physical wellbeing

Being detained on mental health or mental capacity grounds without being assessed or without safeguards in place (e.g. being able to know why and challenge the decision)

Delays or cancellations to scheduled tribunal or court hearings to review care and support decisions

Not being supported to understand how different laws affecting their life, care and support during Covid-19 have changed

Removal or changes to care and support without their involvement, this could include being moved from one place to another

Being moved into a new place without support to maintain mental and/or physical wellbeing there

Restrictions in place which impact mental or physical wellbeing (for example no contact with family or not being able to exercise in ways you used to) without appropriate alternatives in place

No support or a significant reduction of support to help them observe their faith or beliefs

No support or a significant reduction of support to help them express and manifest their other beliefs

No support to help them continue to meet with groups important to them using alternatives to face to face meeting (e.g. online)

Children young people with SEND not being able to access education due to no or a significant reduction in support to enable safe access

Lack of access to welfare benefits/other entitlements to support daily living

Loss of possessions or lack of access to items that have meaning to them due to being moved to another place

Any other relevant issues that we have not included in all the options above that you would like to tell us about?

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* 5. Do you believe any of the above issues, that the people you support have experienced, were also about treating them worse than other people because of a particular identity or characteristic they have?

Yes

If yes, can you tell us about their identity(s) or characteristic(s) that meant decision-makers treated them worse:

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* 6. In your experience, has the Covid-19 situation impacted the need to use human rights to challenge poor practice?

It has been less necessary to use human rights

No change

It has been more necessary to use human rights

You can tell us more here, if you want to:

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* 7. Has the care and support of the people you support been affected by Covid-19?

Yes- in general their care and support has got worse

Yes- in general their care and support has got better

No- their care and support hasn't change due to Covid-19

For some it has been better and some worse, I haven't seen an overall trend

You can tell us more here, if you want to:

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* 8. Has the way people can visit the people you supprt been affected by Covid-19?

Yes- They can see them less but alternatives (such as video calls) were organised

Yes- They can see them less and no alternatives have been organised

No- This hasn't changed

This is not an issue for the people I support

You can tell us more here, if you want to:

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* 9. Since the start of Covid-19 have the people you support been involved in decision-making affecting their care and support?

Yes- They have been involved in decision-making. This hasn't changed due to Covid-19

Yes- They have been involved in decision-making but not as much as they were before Covid-19

Yes- They have been involved in decision-making and are more involved than they were before Covid-19

No- They were involved in decision-making before Covid-19 but are not not now

No- They were never involved in decision-making, even before Covid-19

Some of the people I support have been more involved in decision making, some less and for some there has been no change. I haven't seen an overall trend.

You can tell us more here, if you want to:

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* 10. Since the start of Covid-19, when decisions have been made about the people you support's care and support were they told why this decision was made and for how long it would last?

Yes- They are informed in the same way as they were before Covid-19

Yes- They are informed but this has got worse since Covid-19

Yes- They are informed and this has got better since Covid-19

No- They have not been informed and were not informed before Covid-19

No- They have not been informed, this has only happened since Covid-19

Some of the people I support have been better informed, some less and for some there has been no change. I haven't seen an overall trend.

You can tell us more here, if you want to:

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* 11. When a decision has been made about the people you support's care or support did staff or the organisation providing that care and support tell them about how they could challenge this decision or raise an issue about it?

Yes

No the staff / organisation providing care and support have not told them, but organisations did (for example an advocacy group)

You can tell us more here, if you want to. It would be helpful to know who advised you about challenging a decision:

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* 12. When the people you support have raised an issue or challenged a decision was this reviewed or addressed by the staff or organisations providing the care and support (or another organisation they complained to)?

Yes - and they were happy with how it was handled

Yes - but they were not happy with how it was handled

You can tell us more here, if you want to:

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* 13. Do you think those making decisions about care and support during Covid-19 considered the specific characteristics or needs of the people you support?

This could include (but is not limited to) considering any disabilities, mental health or capacity issues, race or ethnicity, age, gender or other characteristics or needs.

Yes- It was considered in a positive way

Yes- It was considered in a negative way

No - It was not considered

You can tell us more here, if you want to:

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* 14. Since the start of Covid-19, when a decision is being made about a person you support's care and support have decision-makers told them about their human rights in this situation?

Yes-They have been informed in the same way as they were before Covid-19

Yes- They have been informed but this has got worse since Covid-19

Yes- They have been informed informed and this has got better since Covid-19

No-They were not informed and they were not informed before Covid-19

No- They were not informed, this has only happened since Covid-19

Some of the people I support have been better informed about their human rights, some have been less informed and some are informed in the same way as they were before Covid-19. I haven't seen an overall trend.

You can tell us more here, if you want to:

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* 15. Do you feel able to raise a concern or challenge with staff about the people you support human rights when decisions are being made about their care and support?

Yes- I feel confident, this hasn't been affected by Covid-19

Yes- But I feel less confident than I did before Covid-19

No- I don't feel able to, Covid-19 has made this worse

No- but this hasn't been affected by Covid-19

You can tell us more here, if you want to:

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* 16. Do the people you support feel able to raise a concern or challenge with staff about the their human rights when decisions are being made about their care and support?

Yes- They seem to feel confident, this hasn't been affected by Covid-19

Yes- But they seem to feel less confident than they did before Covid-19

No- They don't feel able to, Covid-19 has made this worse

No- but this hasn't been affected by Covid-19

You can tell us more here, if you want to:

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* 17. Since the start of Covid-19, if a decision is made about the care and support of a person you support, were they told which law allowed this change?

Yes - They were told which law allowed this, but they were not given details about what law

Yes - They told which law allowed this and were given details about the exact law which allowed this

No - They were not given any information about which law allowed this

You can tell us more here, if you want to:

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* 18. Since the start of Covid-19, if a decision has been made about the people you support's care and support were they made aware that their legal rights under the Human Rights Act have NOT changed in this time?

Yes - They were provided with specific information that their human rights had not changed

Yes - They were told that their human rights were the same, but not given any specific information

No - They were not provided with information about whether their human rights protections had changed in this time

You can tell us more here, if you want to:

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* 19. Since the start of Covid-19 have you used human rights to create change in the lives of the people you support, for example to get a decision or policy changed?

Have the people you support used human rights to create change in their own lives?

And/or have you worked with staff who are using human rights positively in their work?

You can share your story below - this may be helpful to include in the evidence to the JCHR:

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* 20. Last question. Is there anything you would like to tell us about human rights during Covid-19?

Thank you very much for completing our survey to help us understand how people's human rights are being affected during Covid-19.

We appreciate that those working in advocacy and campaigning are also people with families and people they care about receiving care and support. If you would like to complete or share our survey for people and families you can do so here: https://www.surveymonkey.co.uk/r/JCHR_People

If you would like to complete or share our survey for people working in health and care you can do so here: https://www.surveymonkey.co.uk/r/62JS2XS

At BIHR we are committed to amplifying the voices of people's who's rights may be at risk throughout this pandemic and beyond. Our Communities of Practice provide a platform for people to be heard on key human rights issues we work on which affect their life and work. This feeds into the evidence we submit to policy makers, inquiries and reviews. Click here to find out more and get involved: https://www.bihr.org.uk/news/now-live-bihrs-communites-of-practice