On 23rd March 2020, Boris Johnson told the country that people ‘must’ stay at home and certain businesses must close. The impact of this was felt in every corner of society as life ‘as-we-knew-it’ came to an abrupt pause and social interaction with anyone living outside our home was denied. People who were considered ‘clinically extremely vulnerable’ received letters from the Government and advice from their GPs or clinicians to take extra precautions and ‘shield’ at home.
Weeks turned into months, and it soon became evident that lockdown restrictions were having an extremely negative impact on the health and wellbeing of people throughout society. In June the government said it wanted to ‘alleviate’ the loneliness and isolation of people most affected by social restrictions and introduced “targeted intervention” directed at those who had been cut off from family and friends during the lockdown.
Slowly lockdown restrictions started to ease and many families and friends across the UK could once again reunite following strict guidelines and rules set by the Government. In July measures for those in shielding were also relaxed with guidelines stating that they could gather in groups of up to six people at a two-metre distance outdoors, while those living alone were able to form a “support bubble” with another household, visiting one another as often as they like and staying overnight.
However, whilst restrictions have been relaxed for most people across the UK, those living in residential care homes have found themselves exempt from easing and facing stricter measures that severely limit contact with family, friends, and the outside world.
We talked to Nigel Over, whose son Matthew (22) lives in a residential care home, and as a result of Covid-19 ‘shielding’ rules has suffered extreme anxiety, isolation, loneliness, and growing despair of his continued house arrest.
Nigel’s Story
Matthew is 22, has Smith-Magenis syndrome, and lives in Musselburgh in a residential care home for younger adults with sensory impairments. He is one of seven clients in the house. This is an out of area placement, some 22 miles away from his family home. There was no place available to meet his care and support needs more locally when he finished school four years ago. Matthew requires 1:1 support for daytime activities, safety, and care. He is allocated 18 hours per day split between care and social development. A key factor in the selection of a place in a residential care home has been around the need for assistance in the night when he is awake due to the syndrome. Smith-Magenis syndrome is unique in that the circadian rhythm is reversed, so the natural state is to be awake at night and to sleep during the day.
Matthew does not have any of the high-risk factors identified for Covid-19 to trigger shielding for clinical reasons. He is caught under the rules applied across all care homes in Scotland without exception.
The last time that Matthew stayed with us was 16 March. Lockdown commenced on 23 March. Matthew accepted the lockdown reasonably well at that time. Matthew becomes increasing upset when announcements are being made to easing of restrictions, only to be told they did not apply to him. He self-injures by punching his forehead, his glasses become sacrificial, and he will hit/throw his Kindles/MP3 players/mobile phones. All require replacing to try to keep him calm and distracted.
Easing of restrictions to allow one visitor wearing PPE for 30 minutes once a week in the garden, happened early July. I became Matthew’s designated visitor.
Multiple garden visitors and one indoor designated visitor was originally intended to be allowed from 24 July, but this was put back in a Scottish Government announcement on 23 July. Angela and I have been able to visit Matthew for 30 minutes in the garden since 15 August. We also got permission for him to come to us for a BBQ for his sister’s birthday with the care home manager under strict distancing and PPE requirements, and only to our garden.
Matthew received the “Pause to Shielding” letter for 01 August. A seven-page letter saying what was now allowed, caveated with a single sentence stating that this did not apply to anyone in a residential care home. He is still not allowed out from the house for exercise, or short walks, or fresh air, even though social distancing could be maintained with him accompanied by his 1:1 support worker. All activities are home based. He is missing his pottery workshops and his friends he has there.
If Matthew had been admitted to hospital at any time during these restrictions, I would have been encouraged to be with him for as much time as needed to support him there for his mental well-being reflecting his learning disability. If support can happen like this in hospitals, then I see no reason why my son, who is so deeply distressed he is self-harming, shouldn’t be allowed to see him family properly at his home and other safe places.
I have submitted the case for young adults with learning disabilities who are in residential care homes to be treated differently to the at-risk elderly care homes or those in high health risks due to Coronavirus. A reasonable compromise would be to apply the guidance applicable to those in independent / supported living for such individuals as my son. This means assessing the risks and keeping controls in place to minimise risk of exposure to Covid-19. not a full pausing of shielding applicable for the public and even those in the high-risk shielding groups. We have already demonstrated how this is practical to do. So far there is no movement to help us or Matthew. His continuing house arrest is not good for his mental and physical well-being, and this is stressful for us as his parents.
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