The government always gets in. The words of my Grandad when anyone mentioned politics. Sadly I was only 13 when he died but over the years his words have seemed more and more relevant. As we stand on the brink of another change at Number 10 I’m as disillusioned as most of the public appear to be after weeks of party leaders shouting at each other on TV generally showing the manners of a bunch of unruly 5 year olds. While that’s happening everything seems to be falling apart as the current lot have no incentive to put anything right before the new lot move in.

The NHS has been a major talking point since it started in 1948 effectively going broke two years later after the government underestimated the demand for free dental treatment and eye tests. Despite that it has limped on for years with successive administrations thinking throwing more money in the pot would solve everything. Despite the amazing people who work in the service the rapid decline has been heartbreaking to witness. Even 10 years ago I could get a GP appointment relatively easily and I knew that if the worst happened A&E was there to help. Now like many I dread what might happen if I need emergency care.

Watching politicians from all parties stating that more money is the answer to the NHS woes is frustrating to say the least. A friend of mine told me that in the 1950’s when Polio was rife a prominent politician said what we need are more iron lungs to treat patients when what we actually needed was a vaccine. When we finally got one the disease disappeared almost overnight. It’s a simple message prevention is better than cure but one many people in power still can’t understand. I was once invited to attend the offices of The Guardian newspaper in Kings Cross and very nice they were to. It was a round table event on health bringing together various experts in their particular fields. There I met a retired cardiologist who I asked ‘ when you’ve done your wizardry on the operating table and your patient is discharged do you have any idea where they are going?’ He gave me a quizzical look before replying ‘I don’t have the faintest idea, why?’ The point was if the now healthy patient was going back to a dilapidated house where the air quality was poor while living on cheap high fat and sugar foods all the surgeons great work would be little more than a sticking plaster on an open wound.

So far in all the debates and I’ve sat through a few I’m yet to hear the words public and health together. In 2013 responsibility for Public Health was returned to Local Authorities, it was supposed to herald a bright new future but sadly it coincided with ‘austerity’ which started to decimate local budgets. Things have continued to decline until now local authorities are going bankrupt with alarming regularity. Whilst more money is thrown in the direction of the NHS successive governments have been putting more bolts on the front door while leaving the back door wide open.

What’s the answer? Well to start surely we’ve reached a stage of crisis where it’s now an issue of such national importance that it should be taken out of politics. A national committee of experts from the field should be running the show not points scoring politicians at least that way we could identify where the real issues are and start to get to grips with them.

Grandad was from a generation who knew a bit about how to handle a crisis having come through two world wars the first for him signing up as a 16 year old. I wonder what he would make of the mess we’re currently in a working class electrician living in a council house in North London he was a simple man in many ways but that’s what some of the wisest people are. It’s shame todays brand obsessed politicians don’t listen.

One thing I haven’t talked about here is the Radio part of TDW. It’s a world I’ve been involved in since I spun my first disc on Hospital Radio in the late 1970’s. Then as a teenager it was mainly about trying to be like my hero of the time Noel Edmonds. I did though quickly learn there was much more to it than that.

When the BBC was established in 1922 Lord Reith the first Director General said the object of the service was to educate, inform and entertain, he was very precise about putting the three words in that order. Sadly just over a century on and that message appears to have been lost in many places including the BBC. There are exceptions in Radio 4 and Radio 5 live but the corporations new project of decimating local radio must have Lord Reith spinning like a top. Living on the Herts Essex border I have always bemoaned the lack of real local radio for the area. The BBC can only offer Beds, Herts & Bucks with a combined population of 2.4 million larger than the population of Northern Ireland and not far behind Wales, hardly local. To add insult to injury the new policy is to streamline costs by broadcasting shows across a number of even larger areas.

Commercial radio is no better with local stations that exist relying on music based output with the occasional bit of local news thrown in to satisfy OFCOM. That should leave the door open to Community Radio particularly as todays technology allows you to broadcast from anywhere. Sadly in my area three stations have gone under two of them because they went for the ‘plays the greatest hits’ or ‘plays the music you want to hear ‘approach. Number one how is that local and secondly when you’ve heard Queen’s Bohemian Rhapsody for the 8th time in a week you are likely to reach for a good book instead.

Another latest trend appears to be stations that revel in the fact their presenters broadcast from home. On one hand it’s very sensible cutting down on the cost of running an expensive studio but does it really make any difference to the quality of the output? A friend of mine was amazed when I told him I produce The ‘D’ Word on UK Health Radio entirely from home ‘oh I thought you had to go into a studio’ he said. Good radio is good radio it doesn’t matter a jot where you produce it from.

In terms of a radio career which started scarily over 40 years ago I’m happier than I have ever been UK Health Radio fits Lord Reith’s vision to a T educating, informing and entertaining. They show if you have the vision and belief you can still produce great radio. My other involvements are to promote Americana Music a variety I love but hear very rarely on UK Radio and to promote non league football in the local community. I’m just sad that the organisation that pioneered local radio has now chosen to destroy it and the opportunity presented by technology to really involve our local communities in what should be a very personal media is being wasted. For many people radio is a lifeline but sadly too many of those involved seem prepared to shut out those people they should be educating, informing and entertaining.

As my Dad would of said ‘Its been a funny old year.’ That was just one of his words of wisdom others included ‘make a nuisance of yourself and Mum won’t take you shopping again,’ and ‘you can’t please all the people all the time.’ Nobody tells you how to get through a major health scare but it certainly concentrates the mind on whats important. An exceptional medical team and amazing support from my friends and family made me even more determined to come out the other end with a smile on my face. One thing the last twelve months has also given me is a chance to sit back and look at the world around me. Being prodded, poked, pictured and punctured on a regular basis gives you more than a passing interest in the medical system. I must admit I began to get increasingly annoyed when Government Ministers quoted the amount of money they had given to the NHS. For me it was a bit like your Mum and Dad upping your pocket money every week but not being interested where their hard earned cash was going. At least I could point to a good supply of sweets and a weekly copy of Shoot magazine. It seems budgets disappear into black holes and nobody is prepared to even contemplate that money isn’t the only problem.

Thirty years in local government taught me that, like it or not, when it comes to public bodies the private sector are a little creative with their pricing. You only have to look at the amount paid to companies who suddenly sprung into existence during Covid to see that one. If you or I want someone to fix our fence we shop around looking at reviews of previous jobs or personal recommendations there is always TrustaTrader.com. We are also urged to recycle, second hand clothes are now the ‘in thing’ but when it comes to anything medical we are still in the ultimate throw away society. Yes we have to do everything we can to prevent infection but there are plenty of examples where a little bit of common sense would help balance the budget. I have four examples in my garage, having had a few mishaps which have unfortunately led to broken bones between us we have four sets of NHS crutches no matter how nicely you ask they don’t want them back. How many other examples of perfectly serviceable equipment going to waste are there?

Everything now seems to revolve around policies, procedures and asking your line manager. When I first qualified as an Environmental Health Officer my first line manager told me in no uncertain terms to go out there take responsibility and do your job. Now every small question is referred up the tree. The concentration in those days was on how we could solve problems, the process was simple start with where you want to get to and work backwards. That has been turned on its head as policies are now followed like advice in a car manual. I agree we need consistency but we also need to realise one size doesn’t fit all. I’m sure you’ve heard the saying ‘if you’ve met one person with Dementia, you’ve met one person with Dementia.’ Treating people as people costs nothing. I had a simple example involving my own Grandmother who at 97 was finding it difficult to look after herself in her own home, not that she would admit it at the time. The result was a round table meeting with various members of Social Services at her council house. The self elected Chair kicking off with ‘We are here today to discuss the case of Mrs Elizabeth Howard one of the elders of the Borough.’ Before he could continue Gran interupted with ‘I’m not a ***** elder I’m an Old Age Pensioner.’ In a single moment in her eyes the credibility of the meeting had disappeared down the U bend. She was brought up as one of seven children in a flat in Kings Cross and nearing her century she could be forgiven for not keeping up with the latest PC terminology. If the gathering around the table had taken the time to look into her history things could have been a lot less stressful.

On the ‘D’ Word I’m privaledged to talk to a lot of people living with Dementia and their carers. The messages they give me are all very similar when you are in crisis confidence in the agencies that can help is the most important thing and that confidence more often than not comes down to personal approach. I’ve heard stories of Consultants who have dismissed patients who have just received a diagnosis by telling their husband/wife/partner ‘bring them back when they can’t dress themselves.’ On the other hand there are some brilliant dedicated people who go over and above to help. ‘Always treat other people the way you wish to be treated yourself,’ was another one of Dad’s pearls of wisdom and its far more powerful than limitless amounts of cash.

By now you’re probably thinking one of two things either I’m talking rubbish or I’m posing an insoluble problem. Even I admit perhaps there’s a bit of both in there but it certainly isn’t all about money. Thirteen months ago I stood (there were no chairs available) in a packed A&E Department as a number of junior staff with varying accents tried to announce to a room full of chattering people who was next to be seen. The result was expressions of ‘who?, what?,speak up!’ and the jolly man who appeared to have a season ticket judged on the number of people he knew lightening proceedings by shouting ‘house!’ after every unitelligable announcement. Yes you could go down the technical route and buy big screens (although these were flashing ‘no signal review licence agreement’) or just get someone with a loud clear voice at no extra cost. Its a mystery to me why staff who work in conditions like that don’t do something about it or maybe they try and their line managers don’t listen or they are afraid of being branded a trouble maker. The modern phrase is a ‘toxic culture’ or as I prefer to call it a complete breakdown in trust.

The world of work seemed simple in the 1970’s you went for a job interview that revealed whether you were capable of doing the job or not. If you were appointed you were then told to get on with it and as one of my best managers used to say ‘if its going pear shaped I want to hear about it otherwise I trust you to deal with it.’ Sadly I don’t think he would have lasted long in todays budget obsessed world. It all comes down to a matter of trust. Albert Einsten said ‘Not everything that can be counted counts and not everything that counts can be counted’ I wonder if any Government Ministers have that on their office wall?

No job, plenty of time, and fortunate enough to not have to work if I don’t want to. Might sound perfect but it left me one rainy Thursday afternoon looking blankly at a computer screen. Am I too young to retire, what does retirement actually mean? The game plan had always been, leave Local Government aged 55, tick, fill a day with charity work, tick, spend three days doing something useful, big cross! Even after my struggles to deal with the management structure at the Alzheimer’s Society there were definitely days when I wondered if I’d done the right thing. Was I a coward? Had I let my friends down, was I heading for a life in front of the TV watching Bargain Hunt? So what are my interests I thought. Well radio has always been there since I walked through the gates of Friern Hospital (all revealed in Part 1) and over the past two years I’d been welcomed into what I called ‘Dementia World’.

Now I have no idea how many internet searches I do a day, I’m a great one for putting every question I can think of into Google and seeing what comes out. It even became a feature of my Activity Groups, they were known as ‘Google Moments’. How many stations on the London Underground? Ask Pete he’ll ask Google they used to say. Its 270 by the way and one afternoon in one of our groups 14 people living with dementia named over 150 of them before I got anywhere near Google! So into my font of all knowledge I put ‘Radio + Dementia”. Out came a few adverts for Dementia friendly radio sets and a few people had put together some old songs under a heading of reminiscence but the more I searched the realisation began to dawn nobody was regularly talking about Dementia on the radio.

So there was definitely a gap in the market but filling it was something that would take a bit of thinking about. Back in the day trying to get an existing station interested would have been virtually impossible, but the introduction of internet radio had changed all that. But then again who listens to internet radio? Well actually most of us do, every morning I ask Alexa to “play Radio Five Live’ I then go downstairs and hit the pre select buttons on the soundbox that connects straight to whatever station you want. Using DAB the rest of the time, even in the car, I actually realised I hardly ever listen to conventional ‘airwave’ radio anymore.

The next job then was to find an internet station willing to take on an hour of talk about a subject that a lot of people don’t want to talk about. As well as the fact I had nobody to talk to and no format. Enter once again Google which led me to No Barriers Radio in Welwyn Garden City, the station against discrimination. An initial e-mail and phone conversation found a station set up by a team with learning diffculties who had done an amazing job in getting themselves a small cupboard sized studio in a prized office development. When I put my idea to them they invited me in with open arms and suddenly I was back on the radio.

So I had an hour a week no title, no format and no guests. The title came first I’d heard cancer called the ‘C’ word because it held a dread factor so why not The ‘D’ Word as Dementia holds a similar feeling for many people. Next came RadioTDW as a logical title for social media or so I thought, until using my friend Google again I found a Mexican radio station had beaten me to that one. Undetered I started putting a format together conscious of the fact most people have a short attention span and living with Dementia can make that even shorter I needed something to break up my chats. No problem there a lifelong love of all types of music and a pretty big collection gave me plenty of tracks to break up the chat. But who do I chat to? For that I’ll always be thankfull to my local Care UK home Snowdrop House in Ware. They set me up with one of their Dementia experts, a Macbook and a retro microphone purchased from Amazon did the rest.

I’ll be forever grateful to the team at No Barriers for opening the studio door to me but it only took a few weeks for me to realise I needed to look for a bigger audience. When I was working in Public Health I used to present a 10 minute podcast called “I’m a Public Health Professional Get Me Out of Here!” It was what people call a sideways look at the subject featuring plenty of old jokes, my grandads sayings and a Furby called Stanley. (You can’t get much more sideways than that!) Somehow it got picked up by UK Health Radio and was broadcast over a couple of years. In for a penny in for a pound I managed to record an interview with Dementia Adventure, who are a great organisation who arrange holidays for people living with dementia and their carers. A quick mix job with Apples excellent Garageband and it was on its way to UK Health Radio.

Now many years ago I can remember sending demo tapes out in the post to numerous radio stations and then standing there snatching the post from my side of the letterbox as the Postman was poking it through from his. I can also remember being very disappointed when the majority of my targets failed to reply. So this time I was shocked when I got an e-mail back within a day from Johann the CEO at UK Health Radio asking me to call him for a chat. I’d already worked out my approach the station covers every health condition you can imagine, and some you can’t, but they don’t do anything on Dementia. One of my main aims was getting people to accept that Dementia is just another health condition and they could talk about it like they talk about cancer or diabetes.

I must admit I was a bit aprehensive phoning Johann, he’s a very approachable guy but I was still expecting the worst, especially when he started our conversation with the words; “I’ve listened to your demo and I think its very good.” Experience told me that the next word in that type of conversation is usually “but”. This time though it wasn’t as Johann went on ; “I’d like you to do an hour a week for us is that OK?” I’m not sure what he must have thought of my reply which was a sort of mumbled “er well er yes I think so?”

Suddenly a rainy Thursday afternoon internet search had turned into a weekly radio show and that was just the start………..

When I first joined Local Government Margaret Thatcher had just taken up residence at No 10, strikes were the norm and punk had all but blown itself out. Even in those turbulent times I was aware what lurked behind the doors of the town hall was a parallel universe that presented me with something I had no idea existed. The fact I survived the paperwork, the constantly changing policies, and a lack of common sense that left normal people speechless says two things. One I must have some belief what I was doing really made a difference and two despite my best efforts I spent hours banging my head against the brick wall of the establishment without making the slightest dent.

When I finally escaped and I don’t use that word advisedly, life was hard to cope with for a while but just as I was finding my feet in the real world I was cast straight back into the land of make believe which was the Alzheimer’s Society Essex. Now at this point I must make a disclaimer whats to come only relates to Essex unless mentioned as fairly I didn’t work in other areas of the country so can’t speak with any authority about them.

As you read in part three my crash course in dementia started with being in charge of an entire activity group for a day on one leg and quickly progressed to having carers cry on my shoulder and volunteers questioning I had any idea what I was doing. Which given my lack of training at that stage was a legitimate enquiry. Gradually I found my feet in a strange world that had me filling in more paperwork than I’d seen in a decade and battling against a computer system that had originally been designed to keep tabs on widget buying customers not manage the needs of people living with dementia. The fact I survived the first six months which culminated in the longest appraisal meeting I’d had in my life (which included my time managing a department of 29 with a £1 million budget) was entirely down to my group leaders who I’m glad to say remain my good friends.

Unfortunately the whole thing came to a rather unseemly head when we received what was called a TQR, which in simple terms was a service audit. I’d been involved in literally hundreds of these over the years and to be fair most times I’d found the auditors knowledgeable about the service often because they were currently or had been involved in the same line of work. It was then to my surprise that an audit team turned up with little idea of what we actually did. What they wanted to see was a trail of paper, a collection of policy folders and the correct policy documents displayed on the wall. What quickly became evident is what they weren’t interested in was the amazing care shown by my volunteers and staff which regularly went way beyond the call of duty. From the day I started until the day I left I’d made it a requirement of myself to find out something about all our group members so I could engage them in conversation. In doing that I heard some amazing stories and had some great laughs. My favourite was the ex-boxer one of 14 children who said ‘I wouldn’t be here if my Mum and Dad had the money to buy a telly!’ My staff members and volunteers did similar but at no point did this vital knowledge appear on an audit sheet. Accordingly despite our best efforts the auditors couldn’t have cared less.

The day I knew my involvement with dementia would have to carry on outside the Alzheimer’s Society was the day I had a stand up row with the head of the audit team. I’m not proud of losing my temper although I still managed to do so in a constructive manner despite huge provocation. The story involved one of our octogenarian group members who was a Type 2 diabetic. In chatting to the audit team this information came out whilst he was eating a biscuit. The auditors suddenly went into a panic when he said he was allowed biscuits at home and demanded I raise an immediate safeguarding report with the County Council. An argument quickly ensued with me saying wouldn’t it be a good idea to get some more information before raising the alarm in response to which I was firmly told ‘ its not our job to investigate we are a reporting organisation!’ My snap reply perhaps wasn’t the best but its still a sentiment I stand by today as I told them ‘Do you not think Social Services have enough to do without worrying about people eating a few biscuits. At one end of the scale you have baby P and at the other a plate of digestives which do you think is the most important?’ Needless to say if I had any intentions of rising up the heirachy they had quickly flown out of the window after that. But as you probably will have guessed a quick conversation with the family revealed the gentleman concerned had recently visited the diabetic nurse and she had informed them that the occasional biscuit was no problem at all.

Unfortunately that was only one example of a risk averse mentality that strangled parts of the service. We did have some victories one Christmas a volunteer penned a panto for some of our group members and they performed it superbly one afternoon in front of their family members. That one strangely escaped the attention of the heirachy mainly because we were very careful not to tell them what we had in mind!

As time went on I must admit the procession of needless meetings began to take its toll. Sitting round a table being asked every two weeks what is your ‘happy news’ and what are your ‘head scratchers’ would try the patience of a saint in my world but there were those who loved the bi-weekly spotlight. Our service was simple every week we entertain 60 people and the great majority leave with smiles on their faces. My ‘head scratcher’ was how as a team we managed to balance the books, but somehow we did.

My decision to leave was greeted very differently by the heirachy and my volunteers, staff and group members. No doubt celebrating the ‘awkward bloke who bucked the system’ setting sail the management did….precisely nothing not even a goodbye. Despite pleading with me to stay my staff, volunteers and group members staged impromptu parties, had me singing Kareoke for the first time ever, gave me presents I will always treasure and made me cry (in a good way).

Unfortunately my experience has turned me away from major charities and from people I speak to I’m not alone in that but on a positive note it did open the door to dementia world and I had no idea where that would lead me…

Thirty years is a long time in one job and when you finally make the decision to jump ship life can get a bit scary. Whilst I’d maintained a grip on reality by working as a freelance sports journalist as a hobby, Local Government was all I’d known until 2013. Not that I’m complaining the way things worked out, but I was a direct victim of the 2008 crash. A bunch of bankers who would probably have taken less risk if they’d put their funds on the 2:30 at Kempton Park had produced a siesmic schockwave that gave birth to austerity. By the time the aftershocks had reached rural Hertfordshire a department of 29 had to find £100,000 from somewhere. To be honest I’d always wanted to get out at a certain time so unlike so many people who had their lives turned upside down it suited me at the time. My passage out was eased by being taken on immeadiately by an Environmental consultancy run by someone I’d known for a good 20 years. What followed was three years of editing a website, event organising and conducting You Tube interviews. The latter led to me being called the “Public Health Parkinson” by a certain Director of Public Health. Fun as it was a lot of it was achieved on-line and I began hankering for the day to day contact of working with people once again.

Doing a Google search on ‘charity jobs’ may well have changed many lives and it certainly changed mine. I learned that the Alzheimer’s Society were looking for a Group Activity Support Manager in West Essex, whatever one of those was? In for a penny in for a pound I applied with little hope of success, after all what did I really know about dementia? To my great surprise I was offered an interview along with the task of preparing a presentation to persuade commissioners about the value of social groupings for people living with dementia! Now I’m no stranger to presentations having once talked to Commenwealth MP’s about climate change at the Houses of Parliament but this one had me foxed. In the end I started with a game of tiddly winks to demonstrate how games can break the ice and lighten the mood and finished with a recording of Sam from 1988 (See A Little Bit of History Part 1) and it did the trick.

To be honest my first day didn’t bode well for the future, I was expecting an introduction to dementia and the services of the Alzheimers Society I got a pile of policies to read through and a form to assure I understood them. Things didn’t get much better as I was introduced to Salesforce and Arena the internal computer systems which were as blunt as the bluntest of instruments. Two weeks in I injured my foot and was forced to limp about on a crutch for seven days. By then I had been let loose on the groups I was charged with managing which already left me worrying about the wisdom of using a 17th building with a spiral fire escape and an area of glass floor for one of our venues! My injury coincided with an illness for one of my group leaders which left me faced with the prospect of leading two activity groups while hobbling on a crutch. At the time I was terrified now I look back and recognise it was one of the pivotal moments which dictated what I’m doing now and why I’m writing things like this blog.

That day I learned more about how to communicate with people living with dementia than any book could tell me. The key I found was simple…be yourself. I’m a North London lad who loves music and football I was faced with a roomful of people who may live in Essex but virtually all had London roots everyone was up for a laugh and once I got chatting to Elsie about the Dave Clark Five playing Tottenham Royal and Bernard about Leyton Orient I was in. From that day I developed friendships with our group members and their families some of which I’m happy to say remain today. Thats not to say it was all easy going. The first time I realised what dementia was really about was one Monday afternoon. I was sitting with George looking at a picture of Mohammed Ali, “Do you like boxing George?” I asked “I used to box in the army I was a bantomweight,” he replied before giving me a complete description of one of his fights from the 50’s. A couple of minutes later I’d drifted away to another table when George beckoned me over, “Pete” he said “Remind me where the toilet is again.”

I also quickly learned that a life in Environmental Health had given me the ability to think on my feet as it was obvious that despite the reams of policies and procedures little was going to be invested in teaching me how to cope with what was thrown at me everyday. From questions about 85 year old former boxers having a knife to peel their lunchtime apple to carers crying on my shoulder it certainly couldn’t be described as anything but interesting.

Looking back my first few months were certainly a case of sink or swim, on one hand I was working hard to gain the confidence of our group members, my staff and volunteers, on the other I was already banging my head against a wall of bureaucracy that even 30 years in local government hadn’t prepared me for.