Update 18/03/202

PAMIS are taking daily advice from the NHS Scotland web sites in order to ensure we are meeting essential and best practice recommendations.

Although PAMIS offices are in the main closed staff continue to work remotely/home working providing support and essential services. All face to face planned family activities through PAMIS have been postponed until further notice as we recognise the risks associated with bringing us all together especially with the children, young people and adults with PMLD many of whom have significant health issues. We are still offering to support families in person if essential and requested and have due process to ensure we are keeping staff and families safe. Prior to a visit staff must call the family home to ascertain if there are any family illnesses of any sort, if there is they will postpone the visit or carry it out virtually. All staff will follow strict infection control guidelines and practice. Family contact will continue to be maintained through email, text, phone and social media. Many families have already self-isolated and therefore these actions are seen as supportive of their situations.

We are currently looking at different models of support and are exploring digital and virtual solutions to support families isolated within their own homes. These sessions will provide for example adapted activities including sport to do while stuck at home; family carer wellbeing sessions including art and poetry and hopefully yoga and an opportunity to chat and support each other. We are also exploring with key healthcare personnel an audience with opportunity so key concerns and questions can be posed – exploratory at the moment but more to follow.

All PAMIS meetings have either been cancelled or we are holding them virtually. Staff are no longer attending external meetings unless essential and assessed as safe to do so.

The Pamiloo is receiving daily cancellations re national events and we envisage that it will not be out and about over this period. However it remains a resource that can be used if required particularly in any emergency situations. Staff supporting the Pamiloo are taking necessary actions to ensure no cross infection and are extra vigilant in the cleaning and disinfectant after each use.

PAMIS as a staff group are continuing to meet but virtually and on a regular basis to ensure we are also looking after their wellbeing.

PAMIS students from some departments and universities have been terminated although we currently still have Occupational Therapy Students from GCU, working remotely and supporting a digital agenda. Daily virtual support is provided and we are being led by the relevant university policies.

We have highlighted the use of the PAMIS digital passport as an essential resource which will enable any new carers that may be required at this difficult time to engage and understand the specific needs of the person that is being cared for. More information about the PAMIS digital passports can be found here https://pamis.org.uk/services/digital-passports/. We are also keen to share this with other care groups and are currently exploring and online how to guide.

The work we have undertaken in relation to 24 hour postural care is also now a key resource in this current health crisis. We have been asked by NHS Education for Scotland and the Scottish Government AHP children and young people advisor to provide resources to support the messages of understanding the benefit of postural care on breathing and combating postural changes due to reduced social contact. Michelle Morrison PAMIS programme lead for this work will provide an update in our next bulletin and links to these essential resources.

Supporting the education and development of family carers and the care workforce. PAMIS are adapting our learning and development resources so that they can be delivered where possible online or virtually. This will support those who are having to self-isolate but still wanting to work as well as preparing a group of carers who may be unfamiliar with working with people with PMLD. For more information please contact Fiona Harper at PAMIS – [email protected]

• PAMIS – supporting people with PMLD and their families to raise their concerns nationally

We are feeding key issues and concerns from family carers into the Scottish Government via Rodger Watt the Learning Disability Policy Manager in the Learning Disability and Autism Policy Unit. He is in regular contact with updates and we will keep families and other organisations up to date with outcomes.

Highlighted below are some of the key issues that have arisen over the last few days. PAMIS would welcome discussion with local health and social care partnerships about how to address these and to ensure they are aware of the serious issues family carers are currently facing for which there seems to be little uniform support and advice.

1. This morning we asked Rodger Watt at the Learning Disability Team at Scottish Government to escalate our concerns about the lack of specific advice and support for those caring for people with profound learning and multiple complex disabilities (PMLD). We have raised particular concerns that the advice that  is being used by health, social care and education currently concentrates on adults with underlying serious health problems and is not specifically addressing children and young people with PMLD. Although while writing this the advice about schools has changed we have been surprised regarding the lack of thought about how children and young people with complex healthcare have been left within the school setting. Deeply concerning is also the issue that arises when families self-isolate and are not then able to receive home support. Many of the families we know have taken this action to withdraw their children from school. We have asked Rodger Watt from the LD team at the Scottish Government to seek advice and reassurance about what will happen when families have their cared for person at home 24/7. We are also aware that respite services may become compromised and again this is a huge concern for families who are caring around the clock. We have advised that there is serious concern about the lack of understanding in advice such as asking family and friends to take on roles when we know that without intensive training this will be impossible.
2. Several families have raised concerns about the limited visiting times in Acute hospitals and the impact this would have on their children who require constant supervision. This has further highlighted an issue that PAMIS are in discussion with the SG and various local health and social care partnerships about who provides the constant supervision and support of children, young people and adults with PMLD when they are admitted into acute care. Again Rodger Watt is exploring across Scottish government departments but we will also be pursuing this in the localities where families have raised the issue as this issue will be more apparent if this group end up hospitalised.
3. Families have also raised their concerns about essential pharmacy and its availability. We are assured that the Community Pharmacy Scotland are keeping the website updated on a daily basis and questions can be posed. https://www.cps.scot/news-insight/news/coronavirus-covid-19/  We note the correspondence from Dr Rose Marie Parr Chief Pharmaceutical Officer Scottish Government that currently there is no shortage but they are considering the longer term worldwide impact of the virus on future supplies.

• PAMIS – working with others to support solutions

PAMIS as an organisation are keen to play our part in supporting Scotland and wider if required to take appropriate actions to support this specific group of people. We also recognise that some of our resources will support a wider group and we are keen to share.

We will continue to raise the concerns of the families we support as we believe that there are gaps in information for this group of people and in some areas a lack of understanding of the specific needs and issues. However we would also like to be part of the solution. Profound means deep, wise and expert – people with profound learning and multiple disabilities are some of the best teachers we have particularly about how to work together. We hope that in these difficult times we can work together locally and nationally to overcome serious, and in reality life threatening, issues.

Jenny Miller

CEO PAMIS

Email: [email protected]                     Tel: 01382 384655  Mob:  07714981356