Navigating Disability During A Pandemic and the invisible shielders

12th October 2020 by Amy Wolfs

In 2016, my husband David was diagnosed with primary progressive multiple sclerosis. It had been a battle spanning six years, in order to get said diagnosis. Not knowing who to speak to, where to get help and support. It was lonely and it was isolating. Upon his diagnosis, we were fortunate in that he was suddenly surrounded by a team of professionals. Neurologists, pain management, MS nurse, neuro-rehab clinic, physiotherapy, speech and language. All worked to do what they could.

Two weeks into lockdown, we had to move home, and with it move care teams. Our old home wasn’t suitable for David due to his worsening condition, and we had no choice. Suddenly we went from a team of many, to just the neurologist and GP. Our neurologist contacted us, and advised us to shield. Having MS meant David is immunocompromised. Chest infections, urine infections and any sort of infection really, often requires David to need inpatient hospital care. This was contrary to government guidelines. We questioned the neurologists instruction. Not being on the official government list, meant we’d have no access to priority shopping delivery slots, not be eligible for the weekly food drop that the government had organised. We’d be eligible for no extra help and support. But the neurologist stood firm. He disagreed with the official list, and said he was planning on telling ALL of his MS patients to shield. So shield we did.

As I previously mentioned, we moved home during lockdown, losing our entire support team. The most frustrating thing, is that no one was doing new consultations or seeing new patients during lockdown at all. Our neurologist had to be kept at a hospital an hour and twenty drive away from our home, as there are simply no neurologists in general in our new area. Similar with our MS nurse. Speech and language did what they could via telephone, but found it difficult as they couldn’t see David to see his swallowing in person. Wheelchair services couldn’t size him up for a new chair. Occupational therapy couldn’t come out to assess the new house. Pain management couldn’t see him face to face, nor give him an examination so couldn’t do much about his medication needs. Physiotherapy couldn’t see him to assess his mobility. Orthotics couldn’t see him to address his need for a leg brace.

The whole system completely fell apart. David is prone to chest infections, as mentioned above. It’s a side effect from him having swallowing problems, particles of food enter into his lungs and cause infections. Because the symptoms of a chest infection are similar to that of Covid, no GP would physically see him to help. On three separate occasions, before national testing was rolled out, we were left at home not knowing whether he had a chest infection or Covid, and having to delay treatment with antibiotics to simply see if he got worse or not.

Navigating this pandemic, has been incredibly frustrating, isolating and emotionally and physically draining. There are stories about disabled people having to buy their own PPE for PA’s and carers they’ve hired, essential support stripped back and in most cases, not offered at all. At the beginning of lockdown, those who were classed as ‘Clinically Extremely Vulnerable’, were advised to shield on the premise of protecting them. That’s completely understandable and a wise move.

However, to lock those same people down, without help, without support, without medical care and completely adrift from the outside world? That isn’t understandable and should never have been acceptable. There are thousands of people across the country in similar circumstances. In some cases, they don’t have a carer as David does. They rely on outside help and support and have no one in the home to help them when is needed. We are the forgotten shielders. We are those who’ve been left to navigate a pandemic without a compass or a map. We’re strong, undeniably so, but a little help wouldn’t turned down!

Do you have a story to tell about how the current situation in schools is affecting you and your family? We can help your voice be heard. Please contact brtusreporting@gmail.com

Leave a Reply

Your email address will not be published. Required fields are marked *