Introduction

“Knowledge is the first step”: Empowering unpaid carers in Scotland to name and claim their human rights 

“Knowledge is the first step”: Empowering unpaid carers in Scotland to name and claim their human rights 

A blog by Lorraine Barrie, Making Rights Real 

In partnership with Coalition of Carers in Scotland, Making Rights Real recently delivered our course “Human Rights and Unpaid Carers” to carers centre workers who provide advice, advocacy and practical support to unpaid carers all over Scotland. I was so impressed by their knowledge, dedication and expertise. While sharing their experiences over 3 sessions, the sheer breadth, complexity and extent of the unmet need they were facing became clear.

We talked about how often duty bearers- in this case the local Health and Social Care Partnership (HSCP) – invoke resource allocations policies and budgetary concerns when they are unable to meet unpaid carers’ and disabled people’s needs. But these unmet needs should be framed first and foremost as a potential human rights breach.

While delivering this course, what struck us again and again was that in health and social care provision, when things go wrong, they go very wrong.

Anonymous casework examples included

  • HSCPs making blanket decisions not to carry out assessments required by legislation
  • Carers being unable to leave their homes to attend their medical appointments
  • Rights breaches lasting a long time and, even with advocacy support, remaining unresolved
  • Carer’s stand-alone rights being ignored
  • Views of carers not being considered during hospital discharge decisions
  • Lack of support with home schooling and school refusal
  • Respite provision unavailable.

The issues raised by our participants confirm much of what was found by the Equality and Human Rights Commission, in their 2019 Scottish research Challenging decisions about adult social care in Scotland EHRC.

Participants told us:

The issues we heard indicate that unpaid carers often experienced violations of their rights. If an unpaid carer has their own medical diagnosis and is unable to attend their hospital appointments for treatment (due to refusal of the duty bearer to provide replacement care) is this an infringement of the unpaid carer’s human right under Article 3 (prohibition of torture and inhumane treatment)?

If a duty bearer enforces a blanket refusal to carry out assessments as required by law, surely this is unlawful and challengeable?

If an unpaid carer’s views are not considered in decisions regarding hospital discharge of the person that they are caring for, does this infringe the unpaid carer’s human right under Article 8 (right to family life)?

Right breaches are compounded by systemic barriers to accessing legal advice and representation. There seems to be inadequate referral routes to solicitors or advice agencies in the most serious cases. One of the first steps in changing this is helping unpaid carers to be confident using the language of human rights to advocate for themselves with duty bearers, and to have good support to challenge bad decisions when necessary.

During the course we talked about how the UNCRC Incorporation (Scotland) Act 2024 could be a powerful tool to enforce the rights of young carers. This new Act only applies to devolved legislation and has yet to come into force, but on the face of it, young carers could use this Act to challenge duty bearers in relation to Acts of the Scottish Parliament and Scottish Statutory Instruments.

The following UNCRC rights are of particular significance to young carers, how can the new Act better realise these rights?

  • To have their views heard and taken seriously (Article 12)
  • To access to primary and secondary education (Article 28)
  • The right to play and to rest (Article 31)

At the end of the course,100% of participants said they wanted to continue developing their human rights knowledge and practice to better identify and challenge rights violations.

Thanks to Shubhanna Hussain, who co-designed and delivered these sessions and brought a huge wealth of expertise about carers rights. I think she summed up the point of this work perfectly: