Challenges We Face: Travelling with Dementia

By Barry Jackman

I recognise the passion with which people address their concerns. When I was launched into the world of dementia care I made the assumption that NHS/Adult Social Care would be there to help and what a shock to find that I was on my own. Until that point, we were a hardworking couple who never had the need to seek support and were looking  towards a long retirement. That didn't work out as planned and it was only a chance remark by a former colleague that steered me towards an Alzheimer Café where I discovered many of the answers to my questions and a body of people who understood my situation. It was then I realised I was not on my own and by working within a group, change for the better became a possibility.  ​

Cross Solent travel can become a major issue in our lives under certain circumstances. Until now, I didn't realise the potential cost of multiple trips associated with ongoing care let alone the difficulties encountered with patients with post-traumatic stress. I remember having to attend a hospital appointment in Southampton on the Monday following a festival.  Red Funnel provided a chaperone who escorted us through the throngs festival-goers and helped us disembark. I was so impressed and I really appreciate the value of assistance when it is needed.
 
My focus, for the last five years, has been the support of families touched by dementia. Few people realise there are almost 3,000 people diagnosed with the disease on the Island and the majority live at home and this number is set to rise considerably over the next 25 years.
Any sort of travel becomes a challenge and when off Island hospitalisation is required, a spouse of 50+ years may be separated and face the prospect of physically visiting, negotiating ticket purchase and dealing with the mental trauma of separation. In addition, an elderly spouse may not be in the best of health. Poor eyesight and poor hearing exacerbates the situation. 
 
I am still able to personally negotiate cross Solent travel, but I fully appreciate it can be difficult for many. But this is where Wightlink can demonstrate their commitment to providing a good service to all passengers. I have a smart phone and an Amazon account. I use online banking and prefer to pay by card rather than use cash, but I recognise there are many who are not as savvy. Clearly, Wightlink embraces a contemporary approach to business; it has shareholders. I have a pension that depends on investments, so I will continue to grumble about the cost of travel and feel grateful for the discounts that occasionally come my way. 
 
There will always be people who need frequent travel for medical reasons especially now that the Island has joined with Hampshire in its "fusion" initiative. The NHS is working to improve Island medical care but we will never be able to support a broad range of specialists so people will have to get used to travelling to mainland hospitals for major surgery. How to achieve this, is Wightlink's challenge.
 
In the last few years, we have kept the importance of dementia awareness prominent within the IWC and IW NHS Trust. The result is the appointment of 4 dementia navigators three of which are community based and one at The Memory Clinic and two dementia associates at the hospital as well as a number of other innovations. Perhaps now is the time to explore the possibility of a Wightlink Travel Navigator whose task would be to co-ordinate the requests for NHS/special needs travel. With a designated contact number and with authority to make decisions with regard to unusual travel requests (an extra days travel to accommodate late finish of Salisbury Outpatients, for example). Part of their role could be visiting community groups to outline Wightlink's community involvement. This would be seen as a proactive move; the face of Wightlink on the back of bus?
 
More specifically, I prefer travelling Wightlink because the journey is quicker, the service is more frequent and there are plenty of seats. The stairs are not so steep, but the announcements can be much too loud, especially for people with dementia, though there have been occasions when they have been inaudible. I especially appreciate being addressed correctly and cheerfully on checking in.