Reflections on a 5-year journey
This week we celebrate the 5th anniversary of the The Ness Group. A momentous milestone considering 10-20% of small businesses fail in the first year and a further 70% within the first 5 years! On top of this we have battled through the fall out of Brexit, survived a global pandemic and now face a UK recession. I am so proud of the team I work with, the families we care for and those individuals who live with this debilitating illness and remain so optimistic and strong.
I am often asked why I decided to tackle dementia and build an organisation dedicated to helping families and individuals living with dementia. There are two reasons why I am so passionate about caring for those living with this disease and why I left a senior NHS position to create one of the best dementia specialist organisations in the South West.
- The treatment of Dementia is, I believe, unique. Unlike Cancer, Cardiac Disease, Parkinson’s, Stroke and so many other long term health conditions, dementia is treated outside our hospitals (in fact hospitals are the last place someone with dementia should go). Dementia requires limited medical intervention & there is limited drug intervention. Instead dementia is treated locally:
- By specialist organisations, volunteers, social workers, community nurses.
- We know that significant cognitive impact can be made by individuals who are empathic, kind, emotionally intelligent but have no formal nursing or medical training.
- It is a chronic illness that requires a truly integrated approach from nurses, social workers, voluntary organisations and specialist organisations within their local community.
If (as I have) you have worked in healthcare for 20 plus years it is incredible to see the potential impact all these factors have on a disease outside traditional medicine. This is one reason that motivated me to start up a dementia care group. If you want to find out more about this, give us a call on 01626 774 799.
- Secondly each and every individual living with dementia is unique (as is every human) and the way the Alzheimer’s or vascular dementia affects the individual is personal to that individual. The presentation of the Alzheimer’s is dependent on an individual’s social history, their culture, their biography, the disease progression and so much more. This makes helping those living with dementia never dull, endlessly fascinating and a challenge to ensure you care for that individual in a way that works for them as the amazing individual they are.
The First Year
On November the 2nd 2017 we welcomed our first Ness member through the doors of our first Ness Healthcare Hub. Launching from an ambitious and (no doubt) wildly optimistic idea into an actual trading organisation is both very exciting and incredibly stressful. You have given up a secure salary, a pension, job security and now everything rests with you. At the same time as launching The Ness my wife and I had moved to a new part of the UK and had our first child.
That first year was a stressful time of trying to pay the bills, encourage families to visit, to utilise our service and educating the health & social care professionals about our innovative approach to dementia. As so many entrepreneurs know, you expend so much love, drive, time and passion in those first years to help the enterprise survive.
From day 1 we were dedicated to solely support individuals with a diagnosis of dementia, in a space that was cognitively stimulating and designed to improve mental health. We were not a day centre but all too often in those early days we were misunderstood and mis-labelled. However, I was also learning and testing and questioning everything we tried and in that first year it became evident that using a single space to engage anything between 5 & 20 individuals with a range of cognitive abilities was not tackling some of the disease’s challenges. There had to be a more therapeutic, a more clinical way to run the service.
Covid and The First Lock-Down
We had 2 good years prior to the first wave of Covid and in that time I built up a local reputation and we became better known for offering outstanding care to those living with late complex stages of dementia. We became experts in Cognitive Stimulation Therapy (CST) and used Aimee Spector’s therapeutic framework in multiple formats with varying levels of dementia. However, Covid hit the UK in March 2020 and like so many small businesses we were at considerable risk of closure. Adapting to survive was essential.
We therefore focused on 3 things: we increased our Outreach service to help families in their own homes, like many we launched a digital solution but probably most significantly we changed our clinical model. Rather than closing during lockdown we moved to a rule of 5 – creating small bubbles of 5 people (including our facilitator), these bubbles were self-supporting, didn’t mix, remained together over weeks and built good friendships. This simple change was amazing! We instantly noticed higher levels of engagement, improved cognitive function and more contentment from staff and Ness members.
I became fascinated by the potential impact we could have on maintaining an individual’s cognitive function and delaying both the need for complex care and acute intervention by social care. Covid started The Ness on the clinical journey which we remain committed to today.
We started to test group-based therapy, led by registered healthcare professionals, who then categorised an individual according to their dementia stage and every session was impact measured to prove efficacy. We have come out of Covid a much stronger organisation with a more effective clinical model of care.
The last 12 months and the search for clinical solutions in dementia
Coming from an NHS background, with an interest in robust research to prove impact I had always been keen to find a way to measure what we were doing. To prove to medical teams, Older People’s Mental Health Teams (OPMH) and Primary Care that dementia should be and can be treated through validated non-pharmacological therapy.
We know that medicine has spent decades looking for a drug solution to Alzheimer’s and failed. We know that antidepressants, anti-psychotics, benzodiazepines and other medications can be harmful and often ineffective. There is also a growing amount of literature around the positive impact on mental health through various therapeutic interventions like cognitive stimulation, reminiscence therapy, talking therapy, music therapy, art therapy the list goes on and on. This is a disease that attacks the very fabric of our brain, the neurons, the dendrites the chemical messaging, it attacks and kills our brain cells and to counter this we have to keep our brains active, continue to learn, continue to meet people, socialise, reminisce and stay physically active. There is no quick medical fix. Neuroplasticity is the goal!
From the first year of the Covid lockdown that was what The Ness began to concentrate on.
- How can we introduce a clinical model that can maintain an individual’s cognitive function, delay their decline, & improve their happiness?
- How can we measure what we do?
- How do we prove to families & healthcare that the service is cost effective, in fact more than cost effective it saves £1000s a year?
This is a journey and we continue to explore, develop and improve. Today we employ 4 healthcare professionals who complete all our baseline cognitive assessments, we categorise each and every Ness member according to their dementia stage and place them in a small group with outcomes associated with their function, we focus on the use of CST in our small group therapy, adapting the framework to work with individuals in the late stages of dementia. Finally we measure everything using a validated NHS tool that can show the functional and cognitive impact for each individual.
Although we are creating an innovative clinical model our members and those families who utilise The Ness see only a compassionate, stimulating, socially connecting service that understands the illness and works tirelessly to improve their lives. If you would like to learn more, give our friendly team a call on 01626 774 799.
5 years on we have grown from a concept in my head into a large, exciting enterprise; we have 3 Healthcare Hubs open in South Devon, we have an outreach team across South Devon, we have Active Minds groups in Mid-Devon, East Devon & Torbay and we hope to open a state-of-the-art facility in Exmouth in 2023 and we are looking to work with counties across The South-West of England and beyond.
We strongly believe that dementia can be treated, those diagnosed with the disease need specialist support to maintain function, improve neuroplasticity and treat the side effects. Just because someone is in their 80’s, shouldn’t be a reason to isolate them, to not look for solutions and to wait for death. In the next 5 years I would like to work in partnership with the NHS, with local government and other organisations to build specialist hubs across Devon, Somerset & Dorset helping families and individuals remain at home, delaying cognitive decline for as long as possible. That is my call to action!!
If you would like to learn more about how we work, our aims and about our team, please do not hesitate to get in touch. You can either fill out the form below, give us a call on 01626 774 799, or email us at [email protected].
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