Written evidence from Dr Sue Parker (COV0150)
RIGHTS AND RESTRICTIVE POLICY IN CARE LOCKDOWNS
My son is 29yrs old .He has autism, LD, challenging behaviour and OCD and can only function through maintaining structure and routine. He resides in a care home and would usually attend an autism specific adult day centre each day and have overnight visits to family home every fortnight. The lockdown restrictions on care homes as they currently stand mean that he can no longer attend his day centre even when it is due to reopen nor can he come to the family home to visit. This has exacerbated his challenging behaviours for which he has medication to manage escalations.
My son has no 'friends' only family. He is unable to comprehend why he cannot visit his family home- he has no mental capacity (I am his Deputy for Health and Wellbeing). He will not tolerate my visiting the care home to sit outside as this does not fit in with his structure of coming to stay overnight at the family home. Physically seeing us or indeed skypeing only exacerbates his anxieties/ behaviours because 'seeing' us means for him 'coming home'..He refuses to go out as there is no day centre to go out to. It is heartbreaking to see all the progress he has made slip away day by day as his anxiety escalates and medication ,as the only tool believe me that alleviates his anxiety and challenging behaviours beckons. I am fearful that this tool itself will lose its efficacy the longer this continues and the prospect of where we can go from there is unthinkable. Everything that structures his world has been taken away and every day that passes make life more difficult for him
My MP assures me this matter had been forwarded to DOH. And despite also contacting PHE, I still await to hear when Government will address and review care lockdowns. No progress.
How is it rational or reasonable for the government to keep certain care populations in lockdown when ever increasing freedoms are enjoyed by the general public (holidays ,mixing of households/ overnight stays/ pubs etc)? To what end is this restrictive rule on care homes for this group of young adults being continued? It cannot be to protect public health given the recent easements for the general public nor indeed to protect the health of this group of younger service users themselves within their residential placements for the very care staff supporting them in those homes will also themselves be enjoying these freedoms and hence this in itself carries risk. My sons care home do a remarkable job as do the healthcare professionals that support him but many care providers for such groups of service users find their hands tied by the current restrictions and they have many parents wanting to visit or have their loved ones home for weekend visits. It is now almost 17 weeks into care lockdown. It is unsustainable to keep these service users in lockdown indefinitely when increasing easements are enjoyed by the general public. The care home lockdown has had no such review re easement or individual basis(i.e current /past infection rate or service user disability)
PHE have stated that age and clinical vulnerabilities are the main transmission routes for the virus. but the vast majority of young adults with LD/Autism/mental health fulfil neither category. My son and others like him are neither elderly nor frail and enjoy good physical health with no underlying health issues. This younger group of adults with autism, LD and mental health issues have been made wholly invisible during coverage of this crisis and the blanket restrictive practice on all care homes continues to take no account of differing 'care' needs/disabilities. It is undeniable that these care lockdown measures will have long term mental health ,behavioural consequences and long term medication implications for this group the longer they continue ;a veritable time bomb in terms of LD/autism /mental health service users well being and also in terms of paid/unpaid carers resilience in dealing with the consequences of these restrictions. The continuing delay in opening up restrictions on care homes for those service users who are physically healthy yet have these particular disabilities is unsustainable. When will PHE address and review these measures? As the virus continues to recede, when will this group of service users be allowed out of lockdown so that they may begin to recover the structure which is so central, not only to their well being, but also to the ways if which they struggle to make sense of the world around them ?
It is never easy being the parent of a child with special needs whatever their age but my son and so many others like him need to be 'let out' to come home and visit the families that love and support them .I ask the committee (as a desperate parent and dutiful Deputy) to urge reopening of these 'travel corridors' between care homes and family homes/ visits for this group of service users and their families. Surely with infection protocols in place this can be made operational. We just want our loved ones home to safeguard their mental health.