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

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.