The DFEL Winter Gathering on 26th November will be looking at 3 big issues that people with dementia and carers want to see change and improve – information, carers and transport.
Transport and getting round East Lothian comes up in almost every group and every conversation. Buses, parking, driving, pavements, trains are all hot topics across the county and a big issue for people living with dementia – carers and people with dementia.
We’ll be bringing those conversations together and working to find solutions at the DFEL Winter Gathering. We’ll be joined by Andrew McLellan, Senior Transport Officer for East Lothian Council. Andy Hyde, from Go Upstream and Keith Fisken from Sestrans, South East Scotland Transport Partnership. Michael Huddleston from Alzheimers Scotland will also be with us.
Local buses are a life-line for carers and people with dementia. We have a lot to say about our bus services and how they are central to managing life with dementia. They don’t just get us from A to B, they’re social – a chance to have a chat and be with people outside the house. Buses are particularly important where people with dementia and carers have mobility or other problems and increasingly important as people may have to stop driving as dementia progresses.
We’ve got things to say about bus routes, timetables, getting to the places we want to go and how we can access them.
Andrew McLelland from East Lothian Council Transport Services will be at The Gathering telling us about some recent developments in East Lothian including:
- All East Lothian bus drivers have been trained to look out for and support people who need some help to get to their destination.
- Transport Planning – developing our own transport plans
- Electronic timetables on bus stops
- New ‘Apps’ to help us get real time information on buses
- Review of local bus services to inform the new bus tender
Accessing NHS Services
There are big changes in how the NHS delivers services in East Lothian – the new Community Hospital is now open, the Royal Infirmary is being joined by other services and research and is now called the Bio Quarter and some services are moving to St John’s. All these changes depend on good transport links for buses, cars and parking. We’ve had lots of discussion about different routes, bus/car/taxi options, how the villages will access these services and how we get to Haddington, Livingston and Little France (as the Royal Informary site used to be called). We are very concerned about the lack of a bus stop next to the entrance of the new Hospital and want to know how people with ability problems and dementia can access the new hospital safely. We think that the change of name from Roodlands is confusing for some people. For example, people ring up and ask for patient transport to Roodlands and they are told it’s not available. There are concerns about the risks of walking into the hospital too.
People with dementia and carers are often unsure of the law – what are our rights to keep a driving licence after diagnosis? What can we do if we are worried about someone’s driving? Can decisions be appealed? Lots of questions too about Blue Badges, how to get them and how to use them. Our experience is that it is far from easy to get a Blue Badge for someone with dementia.
A dementia diagnosis does not automatically mean you’ll have to stop driving immediately. One in three people with dementia in its earlier stages still drive. But because dementia gets worse over time, there will come a point at which someone can no longer be on the road, for their own or other people’s safety. Because of this, we are legally required immediately to tell DVLA and our car insurance company that we have dementia. The DVLA decides whether we can still hold a driving licence, but in practice, the DVLA relies heavily on information from our GP or consultant. When we tell DVLA about our diagnosis they will – with our agreement – often contact our doctor for a more detailed report. There is information: the Alzheimer’s Scotland’s factsheet and an article from the Alzheimer’s Society.
Stopping driving can be tough. Dr James McKillop MBE has lived with dementia for many years and writes poignantly about his experiences of stopping driving here.
Dementia can be tough on carers too. Research shows that it can be a source of stress, anxiety and work. Often carers take on more and more of the family driving as dementia progresses. This guide from Australia is written specifically for carers.
Parking & Pavements
Last but not least, we have lots to say about parking. Many Town Centres are busy and parking close to shops and amenities is often impossible. People have been talking about the lack of short drop off/pick up spaces outside shops and services, making it hard to nip in, an issue for carers in particular. Folks often drive round looking for parking and then head back home, petrol and precious time wasted. Struggles with poor, crowded and busy pavements are exacerbated by narrow roads and traffic, and sadly, all too frequently accompanied by a lack of civility and understanding that some people move slowly, some feel unsure and anxious. Cyclists not using bells and shared pathways could also cause problems. People are also worried about other folk with disabilities, people using wheelchairs, parents with small children – do they have problems too?
Accessing Blue Badges is a problem for many people unless they have mobility problems. We feel that information is limited and processes are too complex and confusing. A big barrier is getting the professional assessment, often people haven’t seen a GP or health professional in the last year. Nothing is straightforward and carers in particular feel the process of getting the badge adds extra stress. Some problems are easily fixable, for example making forms accessible and available on the website, better guidance and clearer signposting available on the East Lothian website. We want clear information about who can provide the assessment and whether photos on phones can be used. Small but really significant improvements to help people who are busy coping with the demands of life with dementia.
So we’re expecting a lively discussion on the 26th! Join us, 9.30 for 10 at the Maitlandfield House Hotel. Tuesday 26th November. If you are a carer or have dementia, you don’t have to sign up. Otherwise you can sign up here:
Take care, travel safely and hope to see you soon