VALERIE’S STORY
Delays in diagnosing PSP & CBD are common. These delays can cause a knock-on effect for accessing the care, support and benefits families need to adapt their lives to the changes PSP & CBD bring.
For Valerie and Alan Richardson in Teesside however, this wasn’t the case, thanks to their local GP surgery’s social prescriber.
“Alan’s PSP diagnosis came in June 2022, almost 18 months after the initial GP appointment. We had to go around the houses to get the neurology referral due to the NHS waiting times, I even wrote to our local MP and Mayor as we just needed answers.
“During one of our many GP visits, we were referred to the social prescriber service and Emma, our social prescriber, was brilliant.
“Before Alan had even received his diagnosis, we had been linked to our local services. Both Alan and myself had completed assessments; me as Alan’s carer and Alan for attendance allowance. Alan was quickly awarded the highest rate of attendance allowance and I was linked up to lots of local services which have been a real help. The process was straight forward, assessments followed a few weeks after they were requested and local support services stay in touch regularly with updates.”
Being Alan’s wife, Valerie initially didn’t recognise herself as a carer. She didn’t access all the support offered as she felt carers wouldn’t be able to do anything different to what she did. As Alan’s symptoms have progressed, Valerie is more open to what support she receives via her annual carer’s assessments.
“Following my first carer’s assessment, Alan’s needs changed dramatically. PSP is a horrible disease and it has been a shock to see how he has changed from the fit and active person, to relying on me for so much.
“Caring is a 24/7 thing for me now. Although there are good days, the bad days are really bad; Alan struggles to get up and walk without support. To limit the risk of falls, I am by his side constantly.
“We try and keep Alan as active as possible, Alan really lights up when he is out and around other people! As well as attending different local support groups, the attendance allowance has helped to fund practical things such as extra clothing and bedding, increased utility bills due to extra washing, fuel, different dietary requirements and shopping deliveries. It has also helped us to fund extra therapies such as a neuro physio, hydro therapy, acupuncture and Pilates.
“In the last few months, I have begun to access free respite care available through the local council. This is an allocation of eight hours a month which has been really appreciated. It’s a sitting service where they keep Alan company while I have an hour freed up to pop to the shops or grab a cup of tea with a friend.
“In two weeks’ time, I am being assessed for a counselling service. I do have friends and family I can talk to but I think it might be nice to speak to someone I don’t know about the stresses of supporting a someone living with PSP.
“PSPA has also provided lots of support via the Durham Support Group as well as providing valuable advice and information through the Helpline.
“I have been a bit hesitant about exploring carers assisting me at home until now. I know I am beginning to need the help, but it will be someone new for Alan to get used to and I’ve been told I will lose access to the respite I receive. I’m not really sure how it will work out financially either. I think we will have to self-fund. The delay with diagnosis was frustrating but overall we feel we continue to be well supported.”
