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Wales Carers Alliance responds to Welsh Government and Chief Medical Officer response to WCA COVID-19 letterr

04 June 2020

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The Wales Carers Alliance is an alliance of Welsh charities that exists to uphold unpaid carers rights and champion the voice of carers across Wales.

The Alliance has written a letter in response to the Welsh Government and Chief Medical Officer of Wales after their response to the Wales Carers Alliance which was written to highlight the key issues and concerns carers have raised which have been caused by the impact of coronavirus. Please click here for the original letter.

Both letters are included in full and can also be downloaded via PDF at the bottom of the page.

Matt Jenkins

Deputy Director for Partnership and Cooperation Social Services and Integration Directorate Welsh Government

<By email> 1st June 2020 Dear Matt,

The Impact of Coronavirus on Unpaid Carers

Thank you for your letter dated 5th May and for the Deputy Minister’s written statement on unpaid carers on 4th May. We welcome the emphasis on recognising the crucial role of unpaid carers during the pandemic, the reconvening of the Ministerial Advisory Group on Carers and the opportunity to raise issues through the new weekly Task and Finish Group meetings.

The Wales Carers Alliance met on 20th May 2020 and it was agreed that I would write to you again, to seek further clarity on some of the issues raised previously and highlight supplementary issues being raised by carers.

Carers’ rights

  • Thank you for the confirmation in the written statement that the Deputy Minister expects local authorities to maintain the rights of unpaid carers provided under the 2014 Act. Nevertheless, our members are reporting that carers needs assessments and reviews have ceased since the start of lockdown and that support plans continue to be changed without consultation. We acknowledge the strain that local authorities are under at this time, so ask that there is transparency regarding which local authorities have had to make changes to their delivery, regardless of whether this has been done under the provisions of the Coronavirus Act. We would also welcome some further guidance to be issued to Local Authorities as part of the recovery road map process, to ensure carers rights, and the support that they received before lockdown remains a priority going
  • As raised at our weekly Task and Finish Group meetings, many of the Regional Partnership Boards have not met since lockdown. Some of the Carers Representatives have fed back concerns that decisions continue to be made, including those related to financial spend, without discussion and involvement. We would welcome clarity on when the Regional Partnership Meetings will be re-starting, and some written reassurance that Carer representatives will be informed in good time, and offered the support required to enable them to feel fully engaged in shaping recovery plans in their own

Reduction in support and care planning 

  • We welcome the statement by the Deputy Minister that any changes to local authority support to carers must only be temporary, justifiable and removed at the first opportunity. Despite this, many carers are anxious that support will not be reinstated following coronavirus restrictions being lifted. As an Alliance, we would ask that we are fully engaged in the shaping of the recovery road map to ensure carers well-being needs are met, and support can be re-instated as soon as is safe to do so. We also request an equality impact assessment around carers, so we can accurately assess well-being needs, and plan for appropriate support for this particular group going forward.
  • There is an escalation in mental health issues being presented by carers, with many struggling without support, feeling invisible, feeling an ongoing loss of independence and seeing no light at the end of the tunnel. We would like further discussions about how carers can be supported, specifically how carers can be supported to access the support structures within the community, and also if different models of support may now be required.
  • Carers continue to report that people are being discharged from hospital without adequate support in place. This was emphasised by one of our members, who reported that a carer had a loved one discharged from hospital to the home, without being informed that they had We would welcome a reminder to Health Board leads around the duty to fully engage carers in any discharge planning processes, and also follow up referrals in primary care.
  • We welcome your introduction to the National Clinical Lead for palliative and end of life care following our previous letter and we will raise ongoing issues facing carers regarding end of life care.

Social isolation, distancing and shielding

  • For many carers their role in shielding and supporting vulnerable people will continue beyond lifting of coronavirus related restrictions. We would like a discussion about how carers can be supported with

Access to information

  • Carers have been told to contact their local CVS to access emergency information regarding coronavirus-related support. However, we have received feedback that carers have not been able to access information e.g. restricted local office opening hours, no answer on the
  • Since the lockdown, there has been an uplift in the number of new unpaid carers. We would like Welsh Government to consider what measures can be put in place to try to reach these new carers with information to support them in their new

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”.
  • There are ongoing issues related to Direct Payment (DPs). Many carers are employers of Personal Assistants, and have had to stop the support they receive due to the lockdown period. There remain concerns across carer groups around when they can safely re-instate their support service. There are also inconsistencies across Wales with some Local Authorities charging carers for a service they cannot currently use, and some allowing flexible use, with others saying services must be fully suspended. We are aware of the revised Direct Payments HUB area within Social Care Wales, but we would ask that a clarification letter is sent to Directors of Social Services teams to ensure parity across Wales and reduce

Access to PPE and testing

  • We understand that PPE supplies to health and social care are now more secure. As a result, some carers are seeking to reinstate care
  • Despite our previous request, there is still no Welsh Government guidance that sets out how unpaid carers can access PPE, but there is an ongoing need. Some Local Authorities have taken differing approaches, with some offering unpaid carers a number to call to access PPE, and others not engaging with unpaid carers on the issue. We would ask that a clear picture be obtained from Local Authorities around approaches to PPE, and for Welsh Government to endorse the model of enabling unpaid carers to have access to emergency PPE through their Local Authority, if needed. Examples of this can be discharge from hospital, or a family member showing
  • We understand the current requirement to initially prioritise health and social care workforce members under the testing programme. However, we would ask that carers, and the family members that they support who are within the shielding or very vulnerable categories, be regarded as priority groups as soon as is practicable. If unpaid carers were to not have access to testing, the consequences for NHS and social care services could be

Access to Food, Medicines and Health care

  • There are ongoing concerns on all the points noted in our previous letter regarding difficulties accessing food, medication and health care.
  • Non-urgent clinics/Medical appointments are still being cancelled and there is a feeling that unpaid carers are having to ‘hold things together’ while NHS capacity is

Re-opening schools

  • This is creating anxiety amongst carers of children, due to potential increased risks of infection, particularly where the child/young person is
  • Young carers remain a key group of consideration with the re-opening of schools. The current Decision Framework for Education does not reference young carers/sibling carers. If schools are to re-open, then questions for young carers around adequate support systems being re-instated at home will need to addressed before they feel comfortable to return. Equally, safeguards around young carers accessing school with vulnerable relatives living at home will also need to be considered. We ask that Welsh Government works to try and engage the views of young carers in their planning processes over the weeks and months to

As noted in our previous letter, we believe a dedicated discussion is required surrounding the recovery pathway for Wales, alongside the MAG and Wales Carers Alliance. We would like to work together to shape 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.

Claire Signature
Claire Morgan Chair - Wales Carers Alliance

Please let me know if you have any queries or clarifications on the above. Yours sincerely,

cc. Julie Morgan AM, Albert Heaney, Rachel Lewis, Ceri Griffiths

Sent on behalf of the Alliance members.

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

 

Dr Frank Atherton

Chief Medical Officer for Wales

<By email> 1st June 2020

Dear Dr Atherton,

The Impact of Coronavirus on Unpaid Carers

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 have been meeting to discuss the impact of coronavirus. Together, we have been sharing the concerns carers are raising with us, how we are responding as national organisations and what our joint response as an Alliance should be.

I was asked to write to you to note the following points:

  • It would be helpful if a clearer distinction could be made between paid carer workers and unpaid carers in all key messaging, as there is a lot of confusion when guidance is issued and communicated. Carers have also expressed concern that their voice is unintentionally being missed due to the lack of
  • We would like to see guidance to carers on how best to transition out of lockdown whilst caring for an extremely vulnerable or vulnerable individual – carers and families are genuinely frightened about the next stage especially where the person they care for has a terminal and rapidly progressing disease e.g. MND. Or when they are supporting a family member with high complex needs, which makes them vulnerable in the wider community, such as children with
  • The lack of PPE is still an issue for unpaid carers, as is testing. Whilst we appreciate the essentials such as handwashing and social distancing as a mechanism to reduce risk, PPE is still being inconsistently used by care workers and is largely unavailable for unpaid carers. We call for consistent access to PPE and testing to be available for unpaid carers across Wales. Without this, some of the most vulnerable in society may be put at unnecessary risk, alongside those that are caring for
  • There is confusion about who is extremely vulnerable and the lack of acknowledgement that those with certain conditions have a rapidly changing disease – lack of guidance on how individuals can request inclusion e.g. through their GPs with their GPs approval. That said, people have reported that their GPs are unclear about this too. An updated writtenstatement around the new shielding letter that is due to be sent, and the next phase of recovery, would be beneficial for all unpaid carers
  • Many unpaid carers are taking on additional responsibilities and are holding fragile situations together. They are unclear whether they can access clinical interventions and are often immobilised from doing so because they are frightened of exposing their families to Covid. We ask that the pressures on unpaid carers be part of all planning discussions around opening up clinical services again, and appropriate clear information be shared with us as an Alliance so we can support Carers to access community services safely and with increased

We would be happy to discuss any of the above points in more detail. Yours sincerely,

Claire Signature
Claire Morgan Chair - Wales Carers Alliance

Sent on behalf of the Alliance members.

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

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