Rights to get out and about – an open letter to Rail providers and the potential new rail ombudsman

In my role as co-facilitator of York Minds and Voices DEEP group, i am hijacking my blog space to post a letter to the office of rail and road, to the rail delivery group and the department for transport as it is hellishly difficult to find an address to write to on their sites, which have a 900 character limit only.- no good for someone as wordy as me. though this is something we could all have a look at…

Dear Sirs,

Rights to get out and about by rail

Greetings from York Minds and Voices. We are a York-based peer support group of people living with dementia. We promote a message that people can live well and better, regardless of a diagnosis of dementia.

Earlier this year we participated in a national workshop where we discussed the rights of people with dementia to get out and about. We learnt that article 20 of the UN convention on the Rights of People with Disabilities (UNCRPD) clearly states that everyone regardless of disability has an equal right to get out and about and mobilise with choice of when and where they can go at an affordable price. It got us thinking about a previous rail journey we took with Transpennine Express (TPE) to Manchester.

One of our group of about 15 used her wheelchair to access the station and to get on to the train. We identified which carriage had all our reserved seats. We were told, however, that wheelchair access was only via one set of doors on the train. This was 3 carriage lengths away.

We believe we all had a right to sit together in seats that we had reserved. We subsequently met with TPE, and sought clarification amongst other things on:

  • Why they only had one accessible doorway when another member of our group also had to use a ramp with her walker to access her seat at the opposite end of the train?

Charlie from TPE was great and happy to help arrange a ‘supported journey’ for our group on a trip to Scarborough at the end of August.

On that trip we encountered exactly the same problem! It was generally agreed that the trip to Scarborough was more of a ‘witnessed’ journey than a supported one as Charlie saw for himself the ordeal that some of our members endured having entered the train via the only available ramp to travel along a packed and moving train again. You can read more about our trip to Scarborough here from Wendy one of our members here

We felt that more could have been done to support us in gaining access to our seats – knowing in advance that about 20 people would be waiting to get on that carriage at York.

However, we still had a question about the type of doors and the ramp access being limited to one set of doors.

o   When they came to see us, TPE mentioned that new trains would have a single door at the end of each carriage – which would mean any ramp could be used to help people on to trains (as with other carriers).

o   Their recent message seemed to refer to the same double doors being used for access but situated a little more centrally on the train. This is still not meeting the needs of passengers who use wheelchair/walking frames to get on the train before going to their seats.

On TPE’s advice, we agreed that we would share our experience with agencies such as the Office of Rail and Road, the Rail Delivery Group and the Department for Transport to flag up this general accessibility issue and also to explore how we might support you to better support all potential passengers living with dementia in matters that are clearly Disability Rights Issues. We could support you on a national level, as there are over 90 groups like ours UK wide and together we form part of DEEP – the national network of dementia voices (dementiavoices.org.uk).

Here are some practical suggestions of what we might be able to offer.

  • Bespoke training (this can build on basic dementia awareness and involve people with dementia as co-tutors)
  • Looking at Dementia as a disability – thinking what the equivalent ramps and grab rails might be for a person living with dementia; the ethics around flagging up an invisible disability or not; the use of language and its impact upon individuals with dementia.
  • Environmental audits (a walk-through) with people with dementia navigating a station and its services.
  • Looking at the accessibility of all your published materials.

Obviously these are only suggestions so we would be happy to discuss any options with you at your convenience. If you want to find out more, please free to contact us at any time by email or on the number below.

Currently the group is much more inclined to hire a coach – so can the train truly take the strain?….

we await replies

very best wishes

York Minds and Voices

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Dementia care still needs to get undressed!

I posted this article a few years ago but I am convinced it is more relevant today, given the current climate and demands on services where neither more staff, more time nor more money will magically appear any time soon. We need to revisit how we operate. We need to take the lead from people at the heart of services – properly – not through tokenistic gestures. Next week at the UK Dementia Congress I’ll be re-presenting the work I undertook following my reflections below. The content of the work was very much driven by interactions, observations, actions and words of people I frequently meet in my work.

The urge to make reference to dodgy populist makeover shows and super nanny shows on telly has finally overcome my fear of embarrassment at admitting to watching them. And so I now have let you know that I do believe that Trinny and Susannah hold the key to the future of dementia care.

When it was on I used to be gripped by the weekly episode of ‘Trinny and Susannah Undress’. Each week they would move in with a couple where one or both were still dressing in the 80’s, or giving up on their appearance and giving way to expanding waistlines and life in jogging bottoms.

Now I’m certainly no fashion guru (ask my wife) but I thought a lot of the couples had quite some style. However, what fascinated me was the fact that Trinny and Susannah dared to delve to the heart of the relationship between the couple. The shopping for new outfits was almost a side issue as they would ask intimate questions about the couple’s relationship.

They probed into how and why the couple have stayed together and at what first attracted them to each other. They looked too at what couples were feeling about each other now and at what had changed in their relationship (often children and jobs got priority over looking after their own relationship; or a sense of identity and self esteem had gone or drastically reduced).

Each week they got to the heart of the relationship, helped couples rekindle the old spark and remind them that being together happily was still possible even with the challenges life was constantly throwing at them and everyone. The show would culminate in the couple literally standing naked in front of each other (fortunately behind a screen!). I was amazed each week at how Trinny and Susannah could persuade the couple to do this. It was clearly as a result of them daring to broach certain subjects and getting a positive response – they were dealing with people who were truly relieved that they were being helped to focus on awkward topics.

I hope you are still with me on this. Ask yourselves what exactly do we see each week in our work? Do we not wince when we visit couples who are constantly at each others’ throats because one doesn’t understand the behaviour of the other? I regularly see people questioning the validity of decades of marriage because they can’t understand why their partner is rounding on them. What do we do about it? We separate people. We send one off to respite or day care or into hospital for assessment. Then we send people back together equally ill-equipped to cope with the same unattended antagonisms. We resign ourselves to the fact that nothing can be done about a couple whom we perceive to be ‘always fighting’. This then becomes a self-fulfilling prophecy. I have studied and tried out a relationship-centred approach to care and I have shared my findings on a number of platforms (see References and links below). I found, as did Trinny and Susannah, that people want to talk about what’s important to them. It gets results. People are helped to focus on why they are together and they can be united against the dementia. They are relieved to broach subjects together as a couple in a safe environment (much less public than on national television!).

So like Trinny and Susannah, all front line workers in dementia care need to be equipped to carry out relationship-centred work, to broach subjects that to some may seem awkward. Otherwise we remain with the tea and sympathy approach and the usual crop of services. We have constant contact with people with dementia and their carers so we need to enhance the quality of that contact. Far too often I found myself in somebody’s house, seeing a couple struggle living together with dementia, witnessing personal detractions (usually with no ill-intent) and pointless argument. I was usually there for another reason and usually had another appointment 10 minutes later. So the matter could not be addressed and the couple would carry on in this spiral of mutual self-destruction.

I believe (and we must all believe) that people with dementia and their carers can live well with dementia. We need to be aware of the change in dynamic of a relationship that occurs with the presence of an illness in the family. For too long now dementia care has tended to focus on the individual (person with dementia or carer) and their unique set of problems rather than the family system and how it has adapted to whatever illness is present. Over recent years standards, challenges, strategies and visions have tended to overlook this approach. To explain, let me tell you of another telly programme I loved.

‘The House of Tiny Tearaways’ was one of those super nanny programmes where child psychologist expert professor Whatsername works with families with ‘problem’ toddlers. They live together for a week and talk about the whole family system and about the feelings of every member. Everyone is included and specific strategies are tried out.

It always makes me laugh because I immediately think of how these families would be dealt with by the current dementia care model. The child would be sent away for a couple of weeks to a home so parents could have a break. No work would be carried out with anybody and they would be expected to cope better once the child returned.

Adopting such a model in children’s services would rightly cause a national outcry. Why, then, do we tolerate this in older people’s services? Are we content to allow the gaps between respite shorten every time until a crisis and  admission to long term care ensues or can we act to equip families to live with dementia longer in the community?

How about improving the emotional and psychological well-being of people with dementia and their carers to enable and equip them to live together with dementia?

How about breaking the taboo that ‘dementia’ or ‘Alzheimer’s’ is in our psyche?

How about including people with dementia in all aspects of their assessment, diagnosis and care?

How about promoting awareness of the fact that dementia is eminently ‘liveable-with’.

A leaf out of Trinny and Susannah’s book would be a great place to start. Now I’m just off out to buy a pair of crimplene slacks I’ve spotted – they’ll make me look HOT.

 

 

http://www.innovationsindementia.org.uk/videos_gettingalong.htm

 

 

 

 

 

 

One sided or Lob sided – Dementia care is still way off balance.

My annual reblog. STILL the blame-laden stress and burden model persists with the usual suspects of tired services. Let people with dementia set the agenda. Time to level the playing field. Time for asset based approaches

elhijodeveronica

One sided or Lob sided – Dementia care is still way off balance.

From over 15 years of time spent observing families and couples interact; from what people with dementia have told me about their needs and questions, feelings and fears around the time of diagnosis; and more recently from the excellent eloquent testimonies of the likes of Kate Swaffer and Wendy Mitchell in their daily blogs, I have become increasingly concerned about the overwhelmingly carer-focussed approach in many areas of the field of dementia care.

The predominantly care-for-carer approach has prevailed for many years. The Alzheimer’s Society was founded as a carers’ organisation in 1979 and Carers UK has a strong national voice, incorporating Crossroads care now. This support is of course absolutely necessary, but it must not be at the expense of the voice and support of the person with dementia. I am often told in social situations…

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‘I’m not sure i like that…’

A man recently explained to me that he had told a couple of shopworkers about his wife’s dementia out of earshot when she was trying on a dress in a shop. His wife was not impressed when she found out. ‘I’m not sure I like that. You should ask my permission first. why do I need to be flagged up?’

This question arose again last week at a research exchange event organized by the excellent RICA where i found myself in a discussion around how to identify people with additional needs. Our discussion began by focusing on the onus of individuals to ‘self-declare’  (or ‘share,’ which is clearly a less loaded expression). I could hear the lady again ‘I’m not sure i like that…’

OK invisible disabilities are just that, but why should someone have to share intimate information about themselves in public – either through a lanyard or label or card? For some, that may work. Nevertheless,  if we ask people to label themselves or share their diagnosis so we can be dementia friendly, then I would argue we are NOT being dementia friendly. Time and again we hear the phrase ‘if it’s friendly for people with dementia then it’s friendly (accessible, navigable, clear, undaunting, supportive) for everyone’.

Isn’t this just good customer service? shouldn’t everyone be treated equally? here are a couple of examples where the presence and friendliness were beneficial to ALL.

2 case studies:

West Yorkshire Playhouse, under the guidance of the fabulous Nicky Taylor, now put on regular ‘relaxed dementia-friendly’ performances. Looking at the whole experience of the trip to the theatre, not only was the performance slightly adapted (without losing any artistic integrity) but staff and volunteers were out in force with bright coloured t-shirts – approaching and available to anyone. It was easy and provided a great atmosphere. Similar, I felt to the presence of the 2012 games makers – that animating, interested, enthusiastic and helpful force during the Olympics.

There’s a Hardware shop in York called Barnitts. It is a labyrinth of doors, floors, multiple entrances and shelves stacked to the rafters with the most complex array of materials and gadgets – a real assault on the senses. The York Minds and Voices DEEP group all agree that it is the most ‘dementia friendly’ place in York. Why? – not because it has a sticker in the window, or that the staff have undergone some awareness programme – no. But because staff are everywhere, because it is disorientating for EVERYONE who enters. The staff know this and will take you to the item you need and even run upstairs and fetch stuff, regardless of any disability or diagnosis.

A question was asked in our group about how we could get to understand the experiences of people living with dementia. Although we are talking about invisible disabilities, we are not talking about invisible people! – the voice of people with dementia is growing louder across the UK. DEEP – the UK Network of Dementia Voices now has over 80 groups UK wide; the dementia diaries programme captures voices and experiences of individuals constantly and has become a rich source of current and up to date information. The DEEP guides have been produced by and in consultation with people living with dementia.

 

So let’s move away from putting people in a position where they feel pressured to expose themselves and shift the onus on the potential helpers to identify themselves (big badges, luminous t-shirts).  If there is a hunger  to properly serve customers, then customer facing staff everywhere will be actively watching and listening, picking up on small cues and making themselves more visible and approachable, knowing as everyone should that it is more often the situation that disables not the condition. Now i’d like that…’

 

 

 

Now here’s a Manifesto

It’s election time again here in the UK.  Two years ago, at the time of the last election here, I was privileged to co-facilitate a course for people recently diagnosed with a dementia.

Our group produced some powerful statements.  What better time, then, to share the Manifesto they produced below.

Our statements, our learning – a manifesto

Statements:

We want to challenge outdated views of dementia

We are very important.

Many people can learn from us and from our experiences.

We have so much still to offer

We’re still us

Our upbringing and previous experiences affect how we live today more than dementia

We don’t feel old (some of us aren’t!), we feel okay!

We’ve all had a knock to our confidence

We have a right to share how we feel, just as carers do

Dementia friendly is about being friendly, not knocking our confidence or exposing us

Laughter is a good thing, we can still do that

Living well and engaged is still possible with the right support because it’s hard being on your own a lot

I’m so much more than a person with dementia

We are comfortable talking about death

 

Our knowledge of dementia

Dementia is about losing nerve cells. But not all at once – so we just get on with today.

If I like something or fancy someone, I’ll definitely remember! Yes – our emotions remain very much intact and so we remember things of emotional importance.

We know we will more than likely die with dementia than die of dementia, so life goes on!

We might forget your name, but there’s no denying the love we have for you.

An upside – that feeling when you find a dress you forgot you bought!

If we repeat ourselves – so what?!

 

What we ask of you

Don’t highlight our mistakes, don’t rub it in

Help us stay connected

At diagnosis we got little or no information – we want more in-depth information to hand on diagnosis

We want the right to find out more about our dementia

Don’t see repetition as a problem

Don’t see repetition as a problem

Don’t see repetition as a problem

 

So, what to do?

Concise and powerful, there is a lot in there about proper, not tokenistic, inclusion of people with dementia; about a need to focus on equipping people to live well with dementia; and about the huge benefits of ongoing peer support. DEEP, the UK network of Dementia Voices, is now a mushrooming network of over 80 such groups UK wide. Indeed, with Minds and Voices, the DEEP group here in YORK, we are in the process of co-producing another course for people recently diagnosed. this time however the course is being co-designed, developed and delivered by members of Minds and Voices who will be tutors on the course. The course will run in September/October this year.

 

So, commissioners, take note. This manifesto gives real indicators as to how services and policy makers could respond. You maybe can’t afford to add extra stuff to your offer, but you can revisit how you operate to  strike a better balance on the one hand between what is often a tired and outdated service offer seeking predominantly to relieve carers, and on the other hand a need to enhance the quality of life of individuals who still have a RIGHT to voice, choice, control and identity within their relationships and their communities.

At Innovations in Dementia, decades of collective experience and a decade of continued engagement mean we have developed a very clear idea of what constitutes a comprehensive inclusive service.

It’s time for a new approach.

Let’s revisit the meanings of day care; respite (for whom?); long-term care based on the asylums (lots of people under one roof); and  recovery’.

Dementia-friendly communities will be redundant without dementia-friendly and dementia-supportive relationships.

Let’s equip the front line, not with tedious work books, but with a range of practical, emotional and psychological skills.

There are already some fantastic practice examples out there:

As mentioned, the UK network of Dementia voices (DEEP) – already changing lives and a resource to lead on policy change, service delivery and dementia learning.

Getting Along– a new programme from Innovations in Dementia addressing both sides of the caregiving relationship

Super Carers’ high quality tailored care

Shared Lives – where people live together in welcoming normalised environments

The Debenham project – a superb community-led initiative in Suffolk

The TRIO service from PSS in North Wales.

 

Perhaps it’s time to light a fire under the whole set up. We can help you rebuild.

Damian@myid.org.uk

 

 

 

Places still available- FOR A NEW APPROACH TO DEMENTIA CARE – GETTING ALONG

Places are still available for ‘Getting Along  – Time for a new approach to dementia care’ on Thursday 25th May 2017 at Twickenham Training Centre.

This one-day course will be of special interest to anybody from any sector working in or commissioning services for people with dementia and their carers in a community setting.

It aims to help participants:

  • Address BOTH sides of the care-giving relationship,
  • Adopt strategies to equip people with dementia and their families to live well and better with dementia,
  • Influence the creation of a service wide relationship-centred approach.

For more information on Getting Along and on the work and impact to date, see my earlier blog which sets Getting Along in a policy context.

Within the current climate there is a real imperative to:

  • revisit how we operate  – by taking the lead from people with dementia and their supporters to avoid the many pitfalls and traps that dementa sets within close relationships.
  • adopt a rights-based approach in levelling  the playing field in terms of voice, choice, control and identity within relationships.
  • Match the call for increased diagnosis rates with practical support in and around the time of diagnosis. 

Getting Along does all these. Book early for your place. Details below

Date:             Thursday 25th May 2017

Time:             9.30 am until 4pm

Venue:          Twickenham Training Centre, 53 Grimwood Road,  Twickenham TW1 1BY

Cost:             £125.00 inc VAT per person  including handouts, lunch and refreshments

 PLACES LIMITED ~ to register and for any more information contact course facilitator: Damian Murphy (damian@myid.org.uk  / 07927 405854)

The Magic of Minds and Voices

 

There was something magical about the York Minds and Voices get together yesterday. Wendy marvelled at how we have all blossomed over time and she summed up some of its magic in her blog from today.

I am filled with a real sense of wellbeing as I flash back to dancing with Liz as she came in that morning; and to the champagne moment of Rita’s face appearing at the door having been unable to attend  for several months. I am still marvelling at the depth of reflection, the campaigning zeal and the work we produced today without losing that sense of celebration every time this group meets. I’d argue in fact that it is precisely because of that sense of celebration in the room that we produced so much together.

It didn’t feel like work. Like Wendy, I too was struck by the maturity of the group and the powerful sense of belonging and the freedom that it brings to its members – Or rather I should refer to the belonging and freedom that everybody engenders within the group. Freedom to be quiet, to talk, to contribute, to be different, to express ourselves in whatever way we wished. There was, as there should be, a real blend of serious discussion, activism, laughter, dance, tea, coffee and a good spread for lunch.

We not only shared and decided on next steps for our Rights work on transport, we also planned a 15-20 minute slot we have been given on the agenda of the upcoming York Dementia Action Alliance (on the not insignificant topic of inequalities of opportunity and its possible causes including poverty, lack of knowledge, and confidence, and the values of others). All before lunch!!

But what really got me thinking was the short session after lunch when we were to continue discussions on the creation together of a course for people newly diagnosed with dementia. This is a course which members of Minds and Voices will be designing, developing and delivering as course tutors.

This was going to be quite hard thing to do or so I thought. I casually asked what sort of message would members like to share to people newly diagnosed – well there followed a barrage of powerfully assertive statements delivered with a real sense of urgency.

Age is just a number’ ‘It’s not the end of life’ ‘It’s the start of something’ ‘I’ve had a breath of life’ ‘I’m fully occupied’ ‘I’m never in. I can’t do my housework’

 We swiftly moved on to common problems without prompting and there followed a full pros and cons debate around driving by Eddy and Paul.  Acclimatising to change and a range of top tips were then suggested.

Liz brought up the issue of other people and the attitudes of other people, “Someone said to me ‘You can’t have dementia because I see you going around town on your own’. People think we’re ga ga”.

As ever the issue of relationships with those nearest us came up and the importance of seeking to equip those newly diagnosed and their supporters with simple strategies to avoid many of the traps that dementia sets.

I was astounded that within about 5 minutes (for that’s all it was) we gathered a comprehensive range of content and identified tutors for various elements of what will be the final programme.

Producing stuff together has become a bit of a ‘thing’ recently. The magic of this ‘co-production’ came not through the waving of a wand but through the investment of two years of the building of confidence and relationships within this peer support setting. This is real co-production not tokenistic involvement. It takes time, building of good relationships, shared experiences, and the subsequent growth in confidence of belonging to a group of peers to produce the magic. Indeed, Wendy, how we have all blossomed.