2020 has been a difficult year for everyone, but especially the disabled community. In a time where it was hard to see the positives, three charities highlight the extra support they put in place and what they have learned.
As lockdown was announced in March, Dementia UK knew that their Admiral Nurses would no longer be able to work in the same way. Ensuring their nurses were supported was essential.
“We had to find a way to connect with our nurses and check in with them, to ensure that they were OK,” explains Suzanne Wightman, an Admiral Nurse professional and practice development facilitator at Dementia UK.
Suzanne and her colleagues responded promptly to ensure that the Admiral Nurses’ needs were met and that they, in turn, could effectively support families affected by dementia.
“We quickly arranged virtual 1:1s, regional peer sessions and support groups for Admiral Nurses in each care setting alongside regular webinars to respond to the changing educational and support needs of the nurses,” explains Suzanne.
Many Admiral Nurses described high levels of stress and emotional burden as they were supporting families who were experiencing distress due to closed support services, deaths related to COVID-19 and separation due to visiting restrictions. The support and education provided by the team really helped.
The virtual meetings created an opportunity to share innovative ideas, Suzanne and one group of nurses recognised that many people on their caseloads were more isolated than most due to being unfamiliar with technology.
The team quickly came together and created comfort bags for people living with dementia and their loved ones. These were made bespoke for each family.
“The response was humbling, and it enhanced the bond that families have with their Admiral Nurses,” explains Suzanne.
The pandemic has highlighted new ways of working for the Admiral Nurses to not only improve their practice but also support for families affected by dementia.
Through the challenges of 2020, the MND Association has seen positives when helping service users.
“We wanted to reach out and support as many people as we could and we contacted everyone – just under 4,000 people – living with MND in our remit,” reveals Nick Goldup, director of care improvement for the MND Association.
The charity was happy to hear that this engagement was well received and many people living with MND felt that they wanted this as ongoing support which the Association now provides to around 1,500 people living with the disease.
Staff from different roles were redeployed, some taking up roles with the charity’s helpline which saw a major shift, Nick explains: “The helpline used to be people calling in and we reacted to people’s calls, now we call out: Within two weeks of being made aware of someone living with MND we contact them from the helpline.”
As a whole, the charity took a co-ordinated approach, contacting care centres and regional teams along with the people they help to best understand how to provide support.
“A lot of NHS services had gone from face to face to virtual, so we wanted to understand these changes so that we could support people living with MND and also raise issues with the NHS if we felt it was needed,” reveals Nick.
“We also wanted to give support practically and emotionally, so we set up support groups and we signposted to services.
“We make emergency grants of up to £250 available, which, so far, 130 people have used to fund specific equipment or support – that was done in partnership with Doddie Weir’s foundation.”
The charity also launched a commitment to supporting carers, introduced extra guidance for children and young people who have a loved one with MND, created a new information hub on their website and more.
“It’s amazing how it took a pandemic for this to come to fruition, but if one positive can be taken it’s that we’ve been able to change our services and how they engage in a really positive way,” emphasises Nick.
Building a sense of community has been a key focus for many charities throughout the coronavirus pandemic, but this was especially important for the MS Society.
More than 130,000 people live with MS in the UK and many were asked to self-isolate at home during lockdown, creating a need for the MS Society to work quickly to tackle loneliness when face-to-face meetings were inaccessible.
The charity quickly created two services: Time to Chat, a virtual meeting service, and Keep in Touch, a one-to-one phone service.
Ed Holloway, director of services at the MS Society, says: “Loneliness already disproportionately affects those living with MS, so there’s always a need for these things.
“Our groups across the UK are fantastic, but for some people they are unable to access them – making sure people feel connected and supported at home is vital.”
Keep in Touch was already in development when lockdown started, but it was originally created to become a befriending service operated by volunteers. The charity moved quickly to implement the service when it was needed, and will continue the services post COVID.
“We implemented it with staff who had the capacity to do it,” explains Ed. “That was for people who may have been really isolated and needed immediate contact.”
Now a successful service, plans are still in place to expand Keep in Touch with volunteers later this year, using the knowledge gained this far.
A main positive has been the speed of development, Ed highlights: “Under normal circumstances it would take longer to get that up and running because we would’ve spent a lot more time thinking and putting money into development, but we had to move quickly under the circumstances.”
There’s no doubt that many positives are here to stay, despite the challenges. An increased use of technology, better connections between Admiral Nurses and the people they support and more proactive support will continue to be utilised, opening more doors between organisations providing support and disabled people.