Learning Disability Wales is a member of The Wales Carers Alliance that exists to uphold unpaid carers rights and champion the voice of carers across Wales. The Alliance has written a letter to Welsh Government to highlight the key issues and concerns carers have raised which have been caused by the impact of coronavirus. Sent on 21 April, this is our letter. The pdf of the letter is at the end of the article.
The Impact of Coronavirus on Unpaid Carers
As you know, the Wales Carers Alliance exists to uphold unpaid carers rights and champion the voice of all carers across Wales. The Alliance comprises national voluntary organisations which have declared policies on carer support and work together at national level to support carers in Wales.
We recently held an extraordinary meeting to discuss the impact of coronavirus. Together, we shared the concerns carers are raising with us, how we are responding as national organisations and what our joint response as an Alliance should be.
Below is a summary of the key issues carers and the services they rely on are raising:
Clarity of Government guidance and carers’ rights
- There is confusion about changes to carers’ rights in Wales as a result of the Coronavirus Act 2020 and the implications for the assessments and support services currently provided to carers by local authorities in Wales.
- Some carers are reporting that their support plans are already being changed and reduced as a result of this legislation impacting on their resilience and potentially increasing the risk of carers struggling to continue to care.
Reduction in support and care planning
- Carers have reported that people are being discharged from hospital without adequate support in place. This is increasing emotional and physical pressures on carers.
- The closure of day centres and other support services are having an impact on carers significantly limiting carers’ ability to access much needed respite and short breaks. In many circumstances, alternative provisions are not being offered.
- More palliative care is being delivered at home which places a unique pressure on carers at a difficult time in their caring journey. Currently support to manage palliative care at home confidently is limited.
- Examples of blanket DNR notices have created unnecessary fear amongst many carers and those they care for, impacting on the relationships with health care staff that are central to enabling carers to care well.
- Visiting rights have been stopped not just in hospital but also in Independent Living complexes – this isolates carers from those they care for and has led to concern and distress as carers struggle to maintain contact with their loved ones.
Social isolation, distancing and shielding
- There is confusion about guidance issued relating to self-isolation especially where an individual does not live with the person they care for and whether alternative services can be put in place for them in the interim.
- Carers are also concerned about scenarios in which they live with a person deemed by the Government as vulnerable, and have caring responsibilities for someone outside of the home.
- For those caring for the those most vulnerable to Coronavirus shielding represents many practical and emotional challenges. Carers are already reporting feeling increasingly lonely and isolated which is impacting on their emotional and mental well-being.
Employment rights and financial security
- Carers in employment who are living with a vulnerable person are unclear about their rights in employment. Carers who have left work to care, or who have asked to be furloughed to enable them to care, are concerned about future implications for their jobs. Carers are also concerned about the confusion around shielding. Many of those, deemed to be essential workers and are caring for those with significant health issues are not readily able to evidence the need to shield because of confusion around who is regarded to be “extremely vulnerable”.
- Direct Payment (DPs) recipients have raised issues where care workers employed via DPs have been self-isolating and are therefore not able to do their duties. At this stage there has been no relaxation of the DPs to enable family members to be employed at short notice. Local authorities are not stepping in to offer cover to meet eligible needs.
- Some carers have described that their access to cash is diminishing, particularly for those who can’t leave the house. Many still need to pay for things and there is an increase in shops only accepting card payments
Access to PPE and testing
- Unpaid carers have chosen to refuse to allow care workers into the home without the provision of PPE in order to protect those they care for. This is resulting in care packages breaking
- Paid carers have refused to enter a home where someone has symptoms as they have not had sufficient access to PPE, resulting in the unpaid carer having to carry out all the
- There is no Welsh Government guidance that sets out how unpaid carers can access and when they should use PPE to protect themselves and those they care for. Carers are concerned that, like carer workers, they are not being tested if they have displayed symptoms or if they have had the virus.
Access to Food and Medicines and Health care
- Many carers would like to be classed as key workers to have access to shops at protected times/or when suits them best. They would like some form of recognition of their caring role to help improve their ability to access food and medicines.
- Carers have described that the 2m distancing rules can be challenging to manage – particularly for those who are frail and struggle to stand in a queue.
- Carers are reporting that it is difficult to access delivery slots from pharmacies or superstores resulting in significant distress.
- Non-urgent clinics/Medical appointments are being cancelled. Delays in treatments and reduction in access to clinical services can impact on carers making the short-term care needs of the person they care for more difficult to manage.
- Young carers have outlined that in some cases they are struggling to balance their education and caring demands at home.
- An increasing number of young carers are reporting that they are struggling to access food supplies because supermarkets are turning them away. Many are asking for an ID card to help them be able to access essential foods and medicines for their families.
We will ensure to provide regular updates to the Carers and Older People Branch Team on the key issues carers raise with us during the pandemic.
At this stage, we would recommend that Welsh Government should consider taking action to:
- Ensure that the vital role of unpaid carers to the health and social care system is recognised at this time and that supporting them to stay well and to continue caring with confidence is prioritised
- Ensure that carers rights are maintained as far as is practicably possible for as long as possible. Not doing so will be a retrograde step with serious long-term impacts to the health and care
- Ensure that the issue of supporting carers rights including through the Social Services and Wellbeing (Wales) Act is clearly communicated to Local Authorities and Regional Partnership Boards
- Expedite the issuing of clear guidance for local authorities and carers setting out how the new Coronavirus legislation will impact on carers assessments and related support
- Ensure that guidance is created and a supply chain created to ensure that unpaid carers are appropriately able to access PPE to enable them to care more
- Recognise and invest in third sector organisations providing key support services to carers, particularly at this challenging
- Ensure key work areas continue in exploring the needs of carers and strategic planning to meet these needs. In particular the Ministerial Advisory Group on Carers and related Engagement Group must be supported to take a leading role in advising Government about how to best mitigate the impact of COVID-19 on unpaid carers. It is also important that other national priorities such as responding to the recommendations of the Assembly’s Health and Social Care Committee carers inquiry, respite and short breaks work and the rollout of Young Carers ID cards continue to be progressed.
- Consider, alongside the MAG and Wales Carers Alliance, what happens following the coronavirus lockdown in supporting carers to transition back to some sort of normality, ensuring they have the emotional and practical support needed through frontline services provided by social services and third sector organisations.
We would welcome the opportunity to discuss these key issues with you and to work with you and your team to address them.
Finally, we would like to note that we recognise and support the need for Coronavirus Act 2020 guidance to be published at pace, but that this has limited the extent to which organisations like WCA could consult members and provide a shared response.
The Wales Carers Alliance members are:
(in alphabetical order): Age Cymru; All Wales Forum of Parent Carers; Alzheimer’s Society; Care and Repair Cymru; Carers Trust Wales; Carers Wales; Children in Wales; Hafal; Learning Disability Wales; Macmillan Cancer Support; Marie Curie; MND Association; MS Society Cymru; Parkinson’s UK Cymru; SNAP Cymru; Stroke Association.