“I found 90% of replies to my online Twitter poll said, yes to a 24/7 dementia helpline. I put the same question on Facebook and received overwhelming support,” said Derek.
During his research, he found that Wales and Scotland run a very successful 24/7 helpline and there is a smaller one in Kent, supported by Kent County Council, and whilst there may be others, they are relatively unknown outside their local areas.
Looking further afield his research found that the UK comes a poor second to, say the USA who have a well-used country-wide network of 24/7 dementia helplines.
A number of NHS foundation trusts, County Councils as well as charities such as The Alzheimer’s Society and Dementia UK have helplines and do an amazing job in supporting carers, loved ones and those living with this horrible condition but they don’t operate on a 24 hour basis 365 days a year. He says, “Don’t get me wrong they all do a wonderful job with limited resources, but the hours are just not long enough.”
On speaking to some of the day and early evening helplines, Derek found there were usually two responses. Firstly, they don’t really think the demand is there during the night and secondly the cost implications of paying staff to man the phones. However, Derek’s view is that if they announce that they were going 24/7 then they would be inundated with calls.
He goes onto say “I recognize that this is my perception from a limited social media survey, however talking anecdotally to many people and from the comments I have received via Twitter and Facebook, I do believe there is a groundswell of support for such an initiative.”
The theme running through most responses is the common refrain, ‘We found the nighttime to be the hardest and we would have loved to have had someone to speak to, in fact it would have been easier to chat then’.
Derek regularly tweets on a few weekly chats and has recently had conversations on this very subject. Several questions were raised, such as: Who would man the phones? Would there be a cost implication? What would be the line’s remit? Would the person on the helpline be qualified? Would signposting be available as well as a friendly ear?
The general response to the hour and a half chat was positive and the comments constructive.
Reflecting on these Derek believes:
1.Whilst it would be great to have a qualified dementia practitioner, like an Admiral nurse manning the phone all the time, it does not have to be the case. We have seen with the recent NHS volunteering that the public really do want to get involved in a practical way and with training and an empathetic ear they would provide valuable support. Clearly, there would be a trained supervisor on hand to advise if the other person was not able to fully answer the caller.
2.The lines remit would be to lend a supportive ear and voice to the caller and if appropriate to signpost and even send out literature via email or post. An ear at the end of a phone, and a friendly voice in the dead of night would be a lifeline to those that need it.
Derek says, “I have lobbied my local MP who has been incredibly supportive, though with Covid 19 rearing its ugly head it has been difficult to maintain any form of momentum. However, given that dementia sufferers are part of the shielding community, and that mental health issues and loneliness are key concerns I believe that a 24/7 helpline is both essential and cost effective, something the government should think carefully about during this pandemic and its aftermath.”
Summarising, Derek says, “From the feedback I have received, I do believe there is proof positive out there for such an initiative in England and NI. The USA have them, as do Wales and Scotland. All three countries report blanket coverage and they do receive calls throughout the day and night.”
The need is there, the demand is there and the call for one is there. If others can, why can’t we?