What Coronavirus has meant for one of our families
Coronavirus has caused many difficulties for people not least for those grieving for someone who has died during this pandemic. As the weeks and months pass by the majority of the country are now focussed on getting back to the "new normal". Lost jobs, difficult financial situations, school exam fiasco and interrupted travel plans dominate the news.
Our concerns about care homes already seems like a distant memory. However this forgotten group are still suffering. Many would be suprised to hear that those who are medically vulnerable who have spent weeks being cared for away from their families are still not able to have contact with their parents and carers.
For two of our FOXG1 families this agony still goes on. Imagine if you are in a wheelchair, unable to speak and visually impaired. What would you want most? Surely the physical contact of your parents and sibling would be the most important thing to you. Your family have spent weeks in isolation just to make sure that they can be Coronavirus free to be with you as soon as possible. Yet months on they are still not free to visit you. The carers who work with you are allowed to go home to their families yet your family can't touch or hug you and due to a local lockdown in the Greater Manchester area they still can't even visit you. How would you feel? Confused, alone, abandoned. Well this is exactly what has happened to Josh and his family.
"When decisions are made re Josh's care professionals include Josh. He attends his meetings etc so that he is included and his 'voice' is heard. Well, at the moment his views/voice doesn't seem to matter a jot. I really don't think this is what he would choose. I feel absolutely at breaking point with this."
Josh's mum Kate has only been able to see her son 3 times since 6th March and even then it was at a distance of 2 metres. This is cruel beyond belief for Josh and his family. Kate has campaigned for immediate family members to be viewed as a 'key worker'. She would wear PPE to ensure his safety. How can she possibly be more of a risk to her son's health than the people who are caring for him?
Kate says, "The staff at my son's residential are fantastic but we see staff being able to come and go from the residential setting and new staff starting. They are not on lockdown. So, I am asking that the Government allow immediate family members to be treated similarly to 'key workers' when it comes to visitation. That with the correct PPE they are allowed to be in direct contact with their loved one. The psychological effects this is having on those in residential settings and their families is immense and their well being needs to be considered."
Kate has tried every avenue. She has written endless emails and phoned everyone she can think of but has hit a brick wall. Kate is unable to care for Josh at home full time. Normally Josh would be in a residential school during the week and come home at weekends to be with his family. At the start of the Coronavirus crisis the local authority were also not able to provide support at home. Kate and her husband work and they have another child. Josh's needs are extreme – colostomy, tracheostomy, peg fed, incontinent, visual impairment, lack of sleep, uncontrollable movements and he is unable to sit or walk or talk. They are simply asking to be allowed to be his parents, his mum and dad and be able to stroke his hair and to see him.
Sign Kates petition at www.change.org