Freddie or not, here he comes! Local MP visits TSFC.

Last Tuesday we were delighted to welcome the Member of Parliament for Henley and Thame, Freddie Van Mierlo, to The Friendship Centre and Memories Cafe.

Freddie, accompanied by Thame’s Mayor Cllr Andy Gilbert and Deputy Mayor Cllr Andy Wainwright, greatly enjoyed sitting and speaking with our members about various Constituency issues during lunch service at the Friendship Centre. It was wonderful to chat with our MP in such an informal and personable manner, and the hubbub in the room definitely reflected our excitement! In particular, Freddie spent a few minutes catching up with regular Susan Bennett who, as many of you will already know, is close friends with the wife of Freddie’s boss!

The earlier part of the morning struck a more solemn tone, as Freddie spent some time with a group from our dementia carers hub at the Memories Cafe. It was encouraging to see him listening to our concerns during this heartfelt and at times challenging discussion.

We believe that it’s important to record the lived experience of dementia carers, and so a few of the points raised are summarised below.

Our carers expressed their frustration with the lack of post-diagnosis care provided by healthcare services. They highlighted to Freddie the lack of a clear NHS treatment pathway such as those offered to patients affected by other diseases, like Cancer. Instead, people with dementia are often simply told to prepare themselves for the disease’s onset by withdrawing from life as they know it, and their carers instructed to begin making provisions to look after them. This approach can make a diagnosis feel like the end of your interaction with healthcare professionals, rather than the beginning of a treatment plan. If you’d like to read more about this issue then consider looking into the work of activist Kate Swaffer, who has coined it “prescribed disengagement”.

Next, our carers described to Freddie their confusion when attempting to receive support from relevant local agencies such as Dementia Oxfordshire. While these organisations are an invaluable form of assistance, they are unfortunately understaffed and underfunded which means the services they provide don’t always link together harmoniously with primary care and social services.

Freddie notes our feedback.

They also told Freddie about their difficulties in finding useful information about how to care for people with dementia, and what to expect after their diagnosis. Several carers were shocked to have only been handed a “bundle of leaflets” by their doctor and left to figure the rest out for themselves. Many present agreed that they’d received better information and support from fellow carers at the cafe than they had from healthcare services. They emphasised the importance of our group, and others like it, in providing a place to share knowledge and companionship. However, it's important to bear in mind that reliance on these groups is often only due to a lack of support from other avenues.

Finally, our carers also hope that Freddie understood their irritation with the continued absence of a national social care plan to deal with dementia. While appreciating the current government’s focus on social care, they noted that it appears to hinge on the findings of the Casey Commission – a worrying delay as they believe that the older 2011 Dilnot commission has already addressed many of the relevant problems but was not fully implemented.

In response to all of these points, and more, we were reassured to see Freddie listening attentively and taking on board our carers’ concerns and experiences. It was fantastic to hear Freddie express his keenness to return to the cafe, and we hope that he will be an enthusiastic voice of support for people with dementia and their carers!