Everyday Extraordinary Betty Harris (88) chairs Dacorum Hospital Action Group, is an Age UK Dacorum trustee and volunteer and a retired teacher.

June Street, OBE (82) volunteer and ex-CEO of  Community Action Dacorum, is a founding member of Age UK Dacorum.

Find out what happened when these indomitable healthcare campaigners were invited to tea at Buckingham Palace, and what their extensive experience has taught them about learning to look after our health.

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June – thank you for agreeing to be interviewed. We met at Her Majesty the Queen’s garden party to which we were invited as charity volunteers. Betty explained that she was planning to lobby Her Majesty concerning your hospital campaign. Can you tell me a little more about that please?

We were invited to the Queen’s  90th Birthday Garden Party at Buckingham Palace. They were there  to represent the local Clinical Commissioning Group’ s activity in engaging residents to in “have a voice” in the local reorganization of the NHS. Betty’s main intention on this occasion was to try and catch the Queen’s eye, or  Prince Charles’ to ask them to ‘gift’ Dacorum  with a piece of land which we know to be owned by one of them , to build a ‘state-of-the-art’ hospital for West Hertfordshire.

Betty a ‘little lady’ with an engaging  mischievous smile to match her  sparkling green eyes, was determined to make every attempt to catch the eye of the Queen or Prince Charles,  as he too owns  local land with which he could quite easily gift Dacorum to build a superb hospital.

With some ducking and dodging, Betty with me (June)  shadowing  firstly Her Majesty, then each Royal as they progressed around  the garden, managed to get to the front  where our Queen and entourage had stopped.  Alas despite Betty being small in stature, whilst I gave her cover….it was not to be – the Queen’s staff being diligent in their protection of all the Royal family present. However both of us repeated our request in their letter of thanks to Her Majesty.

You both have long experience of supporting our health and social care services. What problems do you feel we are facing in these services and what do you think we need in the UK to improve these?

Despite the ambitions of the NHS, central government and e local authority social care, we both feel strongly that Care in the Community is certainly never going to work 100%. As a retired Herts County Council Home Care Officer of the 1970’s I succeeded in part, in providing 24-hour care using home helps on an enhanced rate of pay. As it was a free service on a pilot scheme it was successful in the short term and I had training lined up for these new workers which were called Domiciliary Care Workers.

In your lifetimes you will have witnessed enormous change and development. What advice would you offer to younger people trying to make their way in life?

Following the two World Wars of course we were short of younger people whilst the older population was rapidly growing and needing extra care when they reached a certain age. Of course now with the technology improving so much in the NHS we are thankfully able to live longer and care for ourselves for longer. And yes it is important that we look for alternative ways of caring for our older people. There are insufficient Care and Nursing Homes. Good ones are hard to access and staff are hard to find. Private Home care schemes now have waiting lists, so the new idea of care in the community will not work if the staff is not available.

I think we should start to educate our young teenagers to care for themselves and their parents too, and grandparents.  There should be a special college course ‘Cradle to Grave’.  I have written to Lord Laming, who used to be a Director of Social Services, to see if he can rouse some interest with the House of Lords  – in the Corridors of power – in investigating the education curriculum.

So what next for you invincible ladies?

What next? Well should I survive for a few years, which I hope I can and will do, I will pursue the theme of increasing the content of current Health and Social Care courses  and introducing adequate pay scales and a career structure.  Betty I am sure will continue to protest at every meeting that there “will not  be enough people  who would wish to follow a  career in social and health care” so therefore we must have some long term beds to ensure older people get the right care when they are discharged to their own home .

We do appreciate this opportunity to set out our ‘stalls’ for the future. If we don’t get some support then I fear that many older people will suffer dreadfully. Both of us are working in different spheres at the moment, Betty still pursuing the ideal response of a central well-equipped hospital  and me trying to speak to people who can have some influence in recruitment of people who can eventually lead a career in ‘From Cradle to Grave’ for Home Carers, and staff of residential social and and health care.

Thank you very much for doing this interview and best of luck with your campaigning!

 

Who cares about your story?

Well do you care?

If you can share your experiences with people who are really listening what difference does it make? Nancy Kline, author of ‘Time to think’, would say ‘all the difference in the world’.

I recently had two privileged opportunities to be heard by people who have the power to change the law in this country. This got me thinking.

Listening to you_NHS

The topic which motivates me most is employment for disabled people.

So when I was asked, on the strength of my written evidence, to give oral evidence at the Work and Pensions Parliamentary Select Committee enquiry  I had to do it.

This was a nerve-wrackingly formal experience mitigated  by the calm steer by the Committee’s Chair, social mobility guru, Frank Field MP.

I prepared all day before the appearance and on the morning train from Manchester to Euston. I had also been lucky to work with a ‘peer coach’ who heard me well. She discouraged me from treating the upcoming experience as some kind of school exam and encouraged me to use my authentic voice and tell it like it is.

I chose to walk from Euston to Parliament as walking is the best way to clear my mind.  On the way I recited the key things I needed to be heard by the MPs.

Our panel’s hearing lasted an hour. I was alongside two impressive leaders, Liz Sayce, OBE and Dr Mike Adams, OBE (ever felt the lack of impressive letters after your name?). It was scary – and exhausting (especially lip reading every detail) – but it was also, I realised,  exhilarating.

Why? In the formal stillness of Portcullis House’s committee room, I was being heard.

And it felt great.

But more than that, it felt like a kind of closure. After years of having my situation brushed aside as ‘unreasonable’ (the expense, that is, of supporting a deaf diplomat- as I then was – possibly not  unconnected to the financial crisis and the headlong rush to make spending savings/cuts), I was able to get across ideas about suggest some positive solutions for the future.

At one point I described myself, referencing legal language which describes support for disabled workers as ‘reasonable adjustments’, as ‘an extremely unreasonable woman’. I then had to wait while the MPs chuckled. No matter how dark the subject matter, any story can include appropriate humour, so I was delighted.

The ‘Disability employment gap’ (an outrageous 30% more disabled people are unemployed than non-disabled) seems to be popular. The All-Party Parliamentary Group decided to tackle it too, from a different angle. I was happy to be asked to take part in their August meeting.

I was given a specific question about how we could promote disabled people starting their own businesses. This gave me the opportunity to connect with an inspiring local business leader and entrepreneur, Norman Tenray. I was pleased that Norman and I had similar views on the question I had been asked: ‘No, it is not a great idea to create a separate disabled business forum or separate Disabled Chamber of Commerce  because we need integration, social capital and the ‘leg up’ that the most powerful (sadly, usually non-disabled) leaders offer and we have a good system in place already.’

The gracious and charismatic Baroness Uddin chaired.  As with Frank Field, I noticed the difference it makes to have such an individual in charge. With an autistic son, she was speaking from experience, from conviction. Many speakers wanted to contribute; they wanted to be heard. In the break a deaf man told me his own story of injustice – an inaccurate assessment leading twice to him losing his home – as well as his professional and personal self-esteem. He and I spoke to Baroness Uddin in the break. I watched this man’s confidence soar. He was finally being heard. I felt humbled. And I had a sense of the many untold stories out there and the wealth of experience which we are missing.

So what is it about being heard which makes it so important?

At Result CIC we ran a final group workshop for staff and clients at Greater Manchester Immigration Advice Unit (GMIAU) whose participants we had already coached 1:1. Listening is at the core of coaching’s effectiveness. Our client had the full attention of the group as she said:

‘Getting my story across was important. It never seemed before that anyone understood. There was no judging. It was non-judgemental: listening with care.’

This is one of the best descriptions I have come across of why being heard is important. It enables us to feel that our experience is valuable and valued by others. It is the ultimate compliment – and connection.

There is a bigger issue about being heard. As the country wrestles with the result of a referendum which it seems many took as their opportunity to be heard after being ignored for far too long. When people are ignored they feel angry and isolated. They don’t feel good about themselves. I can’t help wondering if politicians were taught and used the active listening skills which coaches have to acquire, whether we would be in the current situation.

If you would like to try the experience of being ‘heard with care’ as our client described it, do talk to us. You will be heard. And you may be surprised at the difference it makes.

 

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In January David Cameron criticised business, universities and the armed forces for their ‘ingrained, institutional and insidious’ attitudes which, he said ‘should shame our nation’.

The PM was talking about racial diversity. And his own criticism was immediately levelled at the government’s Civil Service by the Opposition.

Another aspect of diversity, disability, rarely appears on the PM’s radar of issues worth bothering with. If it did, he could have easily used the same language about lack of disabled participation in public life generally, but especially at work.

 In theory the government wants disabled people to work. It wants them to be able to fit into their own ‘hardworking taxpayers’ category. Disabled people want this too.

There are approximately 5.5 million (16%) working-age disabled people in the UK. For the past ten years employment levels of disabled people have remained 30.1% below that of non-disabled people at 46.3%. That’s well over 3 million people out of work and not contributing via their work.

The UK has a central funding scheme called Access to Work. It’s well named. It provides vital grants which enable disabled workers to obtain support to do their job, helping to remove some of the barriers which they can experience. The Department of Work and Pensions (DWP) administers the scheme.

Access to Work is an enabler. The benefits of having work are obvious. But it’s worth a reminder that for disabled workers facing barriers, including additional costs, Access to Work can mean these workers can:

  • do their job to the best of their ability
  • use – and develop – their skills
  • have a better chance of progressing in their careers
  • contribute economically via tax payment and personal spending
  • lead fulfilling independent lives and support their families
  • act as a positive role model to other disabled workers, or aspiring workers.

The government-commissioned Sayce Review (2012) recommended ‘significantly expanding’ Access to Work, aiming to double usage of the scheme long term. The government agreed.

In 2012 the scheme was opened for the first time to support disabled apprentices and those obtaining work experience through the Youth Contract.  In 2013 the then Minister, Maria Miller, promised an additional £15m for Access to Work an approximate 15% increase).

So how have these welcome boosts worked?

The most recent Commons briefing paper (Dec 2015) makes surprising reading.

Below are summarized figures with average unemployment figures for context.

Year         2009–10         2010–14        2014–15        2015–16
Users          37,270        33,412[1]          36,820       [33,270] [2]
+/– on 09/10            n/a         –9.5%          –1.2%         –10.5%
Budget           £98m          £102m           – [3]            – [3]
Unemployment [4]            7.8%           7.8%            5.6%             5.1%

 

To put the cost of this transformative scheme into context, at £108 million, it currently costs 20% a year less than Google’s much-criticised ‘small change’ tax payment.

The DWP is currently (re)-promoting a ‘Disability Confident’ campaign started in 2013 to encourage employers to employ more disabled people. One of its aims is to: ‘Make a substantial contribution towards halving the disability employment gap’.  Good.

The majority of the country’s private sector jobs (60%) and an estimated half the country’s wealth are created by small and medium-sized enterprises (SMEs).

Presumably one of the factors which would most encourage such businesses – less likely to be able to ‘negotiate’ their corporate tax payments than multi-nationals – to employ someone with a disability would be confidence that the person would not bring an additional financial burden.

Some disabilities, in any case, require no cost but simply an adjustment of hours, or location or arrangements within a team. And for necessary ‘adjustments’ involving a cost, this is determined by the disability and the job.  So the DWP’s ‘equality analysis’ referred to in the briefing paper, suggesting that capping the support of the tiny (0.6%) with higher-cost needs will enable about 1,000 more users on ‘averaged’ cost, is to say the least, misleading. And the figures above show that the attempt to boost usage has so far failed.

So we need to ask some questions:

  • Why have Access to Work user figures dropped rather than, as planned, increased, even as employment levels rose?
  • How was the promised additional funding used?
  • Given declining usage, why is Access to Work capping the tiny number of users who need higher-cost support and what is the evidence of the benefits and risks of doing this?
  • What is the total cost of the apparent failure of the scheme to expand? This should take account of e.g. non-payment of tax via working and expenditure (VAT etc), increased use of benefits and likely increased lifetime health and social problems which unemployment causes both to the individual and their families.
  • What are the positive benefits of the scheme and how does it affect individuals’ careers, lives and prospects?

The final question is important.

One of the high risks of a disability, especially one newly acquired, is isolation.  My experience of working with hundreds of marginalized people including many who are deaf and disabled, is that we need role models to encourage us to aspire; we need examples of others succeeding to help us believe we can too.

As a deaf woman who has thrived despite particularly harsh discrimination by my previous employer, I hope I am a positive role model.  Since 2012 I have developed two successful social enterprises with Access to Work’s support. I would be first in the queue to sing the scheme’s praises and sell its benefits. But I have not (yet) been given an opportunity to do this.

The messages are clear:

  • Access to Work works.
  • Disabled people want to work and many need and could benefit from support via Access to Work.
  • The working population is expected to work longer so with age will acquire more disabilities.
  • But usage of the scheme is shrinking.

So Ministers, why not be bold and invest Google’s tax payment into the Access to Work thereby more than doubling the fund, and give the 99% of disabled people who do not yet benefit from it, a fighting chance of doing so?

 

Notes

[1] This figure is an average of the four financial years. The additions within the table on p.8 of the briefing paper are incorrect in the columns for 2011-12 and 2013-14 which should respectively total 30,770 (not 30,780) and 35,570 (not 35,570). I have assumed that the figures in the main body (for new users and existing) are correct and used the correct totals.

[2] Assuming the first quarter’s figure for new users 2,860 repeats in subsequent three quarters of the year – 11,440 total for new users.

[3] Not provided.

[4] http://www.tradingeconomics.com/united-kingdom/unemployment-rate

 

Last month I did a daft thing.

But it was also a good thing.

Sometimes you have to try to keep your promises to yourself.

13 years ago my Mum died of cancer. 2 years after I ran the 5K Race for Life. Mum’s death had affected me so much, it almost literally felt like a race for my life. And then, guess what? It almost was: I struggled big time to finish just 5 km. My lungs felt as if they were about to explode. A few weeks later, they almost did. I had, unbeknown to me, been running with a lung clot and deep vein thrombosis. I guess that has to be one of the best excuses for a poor race time.

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Cue a new disability  (I was already profoundly deaf)  – unable to walk 6 steps without getting out of breath. I felt about 90 years old not 38. I got a walking stick and tried to walk 10 steps without a stop. I tried cycling v-e-r-y slow-ly as it supported me better. I was at that stage not a patient person and it frustrated the hell out of me. I vowed to myself (only) that eventually I would get back to fitness and run the damned race again.

All sorts of things got in the way. They tend to, don’t they? But I kept staggering outdoors when I could manage it and trying to jog a bit. Then a tiny bit more. Sometimes it was almost enjoyable – once on near year’s day in Warsaw where I was on a posting– there was a thick white layer of powdery fresh snow to run on – and only me out in it. After lapsing for a year or more, a serious bout of discrimination by my employer sent my stress levels soaring. And one evening I just thought ‘I need to run a bit’. So I did.

Fast forward to July 2015 and I had built up my distance. I made myself get sponsors (something I have detested doing since primary school) and commit to the Race. I turned up. Then – uh oh! I realized there were 3 categories – runners, joggers and walkers. After the usual mental procrastination, I placed myself at the back of the runners and hoped for the best.

And we were off! Lung clots leave you with reduced lung capacity for the rest of your life. Running on the flat is fine, but hills can be a nightmare, stealing your breath away.  So the start of the race (the exact route had not been available) challenged me with several hills. When I passed the 1km point I felt dispirited as I was already quite breathless. A lot of women overtook me. But there were various very young women who seemed more interested in telling the world about their ‘run’ (for which read ‘walk with phone welded to ear’) so I overtook them. Then later I overtook some people who were actually running. It was a natural thing –   sometimes pushing on, sometimes seeing other faster women go ahead.

Then it hit me. This was it. This was life. The race. The ups, downs, pushes and backslides.

I saw it with clarity, remembering some of the competitive environments in which I had worked –  the music world where the pure joy could be squeezed out by the ruthless competition;  the Foreign Office with its obsession with ‘the top 10%’; the political jostling for power at the top of most organisations had known. It was all a ‘race’ but for what?

I paced on, counting my steps. Then, there was the family waiting to cheer me on just after the 4k point. It felt cool. The winners (approximately one third my age) had of course finished while I was halfway round, but I was still in the middle of the running/jogging mob. Just as I got complacent, the final kilometre presented the steepest hill so far. I made an onlooker laugh as I swore (at the hill, not the onlooker) not too quietly. Then I got there- finished and it was all over with a time that was 10 minutes better than my blood-clot stagger in 2004.

I kept my promise to myself. It felt good. But the real achievement was seeing clearly for the first time that I had inadvertently signed up to races in which I didn’t want to compete.

Life can seem to send you charging in a particular direction. It can make you feel you have no choice but to compete and ‘keep up’. It’s good to catch up with yourself rather than others – to set your own pace and decide what makes you feel good.

Good luck with your own life race!

 

Do you know the feeling? The request comes through that you have been dreading. And you think ‘Uh oh!’. You know – the one which strikes quiet terror into your heart? The one which will find you out? I was on holiday at the time, using the hotel’s lobby wi-fi. And there was the email:

Dear Jane, Harry has arranged a piece for a string quintet for the summer concert. You are playing viola. I attach the score. The rehearsal will be on…’

Scary right?  Perhaps not to you. But I am deaf. OK, so I do play the viola. And I do play regularly in an amateur orchestra. I go to as many rehearsals as I can and ingrain the music in my memory. This means that by the time we get to the concert, I can almost play my part without looking at the music. And that means I can be more aware of the players around me- the violin and cello bows’ movement and, of course, crucially, the conductor and stay moderately in time. But a quintet?  Like five people only? No conductor keeping time? That is scary!

Jane Cordell playing viola with the Ramsbottom orchestra.

Jane Cordell playing viola with the Ramsbottom orchestra.

My first instinct was to say no. But there was a problem. The email didn’t allow for this. You see orchestras are not democracies. It wouldn’t work. Imagine it: ‘Sorry mate, no can do this trumpet part, you will have to busk it….’. Orchestras are benign dictatorships; they have to be: the conductor’s word goes. And the email had been from the conductor.

But I hadn’t played chamber music to an audience for about 25 years, since becoming deaf.  Would it work? Would I let everyone – including myself – down? How would it work? Would it work? I sat flicking through the tiny score attached to the email on my phone, attempting to sing in my head the piece which I did not know – another factor taking me way out of my comfort zone: Handel’s Messiah? No problem– been there and done that several times before going deaf – lodged in the aural memory. Beethoven’s Fifth?- bring it on. But a new piece? Probably written since sound stopped for me? I felt way out of my comfort zone. I felt vulnerable.

If this were a film, things would have magically worked out fine. But the real world ain’t so easy: it takes effort – and imagination.

We had a couple of rehearsals and I felt really exposed– there was nothing to go on: the pianist had his back to me. I could see the violinist and cellist but didn’t know the music well enough to be able to anticipate what they were doing. I started to panic inside. ‘I am letting them down’.

But then I told myself what I would have told my coaching clients ‘They have asked you to do this because they trust you to play well enough. You want to do it. Look at all the options and find the best way’. The thing is my deafness is not an issue in the bigger orchestra. Most of the players now know I am deaf, but everyone knows I can play and find a way to navigate things. And a larger group provides ‘protection’ to an extent. But I realized I would have to brief them and be more assertive in this much smaller group. So I did. I explained that I needed to have a better idea of what was going on with more visual cues. The pianist offered a copy of the score- showing what everyone was playing. That helped and I used this in the concert. Then there was a suggestion that the conductor led the piece – which is unusual, but doesn’t actually distract from the music and performance.

On the day the performance was still nerve-wracking, but it went well. Just after we finished Pat, the excellent lead violinist, winked at me knowingly. And the second violinist gave a big smile. I know she had been nervous too. They got it. That meant a lot to me. Several colleagues came up to say well done. It was a good feeling.

But the experience also helped me learn several things which could be applied to anyone:

  • We need the chance to make ourselves vulnerable to be able to genuinely develop. (Brene Brown’s ‘Daring Greatly’ brilliantly presents the concept of vulnerability as a strength).
  • Chamber music is one of the best examples of real teamwork and leadership. It is based not just on following what one person does but trusting each other at an instinctive level and adjusting/adapting.
  • There is usually a way around a ‘physical’ problem (such as not being able to hear), but psychological barriers are far harder. Sometimes a small adjustment to the way we approach something can open a piece of work to a much wider range of people.

Last weekend I met two musician friends and we played some Mozart together – just for fun. When I became deaf, I never expected to be able to write the previous sentence. I don’t think Wolfgang Amadeus was cheering us on from his grave, but we did ok, and most importantly, we enjoyed it. And with things that feel scary at first, so can you.

Jane is a Director of Result CIC, a community interest company providing coaching and personal development to marginalised people. Join her on LinkedIn . Follow her on Twitter.