Bye Bye Boston

What a fabulous end to the week.  A very warm welcome to the Emanuel Church elder LGBTI lunch.  They very kindly facilitated a discussion about what the community lunch club meant to them.  They moaned about the food quite a lot, so it wasn’t that – I thought the chilli was nice, but I’m easily pleased.  It was the sense of community, it was a safe place to be, when they entered everyone assumed they were LGBT, which was in contrast to pretty much everywhere else they went.  It was assumed when I mentioned my partner was heading out that it was a woman and for the first time in my life I had to declare my sexuality.  This was an important understanding.  The location of the club was easily accessible, it helped that there was free parking – I think.  The members that I met today were overwhelmingly gay men with only two women present.  One woman travelled some distance just to attend this club just for the companionship.  Memory concerns were definitely present within this group.  There was a beautiful point at the end of the group where members enquired about other members who they hadn’t seen in a while and there was a kind of update.  This is a community who looks out for each other.


I had to say goodbye to the lovely Bob Linscott who has taken such good care of me all week and hooked me up with such great contacts.  I have a few Churchill Crowns which I can give to people as a thank you.  They are a nice commemorative coin from the Churchill Trust.  I presented Bob with a crown and he complained that he would rather have a tiara 🙂


I headed up to a lovely café and cake place (took all my self-control to resist the cakes) to meet with Cherri, a dementia champion.  We are definitely kindred spirits and it was great to appreciate the vibe in the USA around dementia training.  I need to send copies of my articles to her and we might even manage to meet up in the UK later in the year.  It was interesting that Cherri uses validation therapy, which influenced my early work a great deal so was nice to discuss that with her.


My last appointment of the day was with Sean Cahill the Director of Health Policy Research who provided me with a really great insight into what the issues were in terms of aging LGBTI community and how they were responding to that.  I’m looking forward to reading their latest report about how the landscape has changed in the first year of Trumps presidency.  My head is reeling from all the information, the love, the support and the friendships I have made here.


The chilly walk back to my hotel was just what I needed and there was a mental toss-up between going to the gym and enjoying the complementary wine.  Wine won.  Early night needed as I have an early start tomorrow as I head to NYC and the best boyfriend in the world.  I have a list of restaurants, bakeries, sights to see from all those I have spent time with over the last two days.  I fear the diet will go out the window…


Hearts, chocolates and the worst kidnap attempt ever…

This has been the best day ever.  I woke up to several messages sending me notice of an Independent Age study about sexuality and intimacy in the over 65s.  I had 30 minutes to muster up a blog post for the most wonderful Jason Day, my PR guru.  Soooo pleased that I managed to just sit down and write something, managed to set up some more appointments in New York, then it was off out to make my first appointment.

Enjoyed an interesting conversation with Dale Mitchell, the CEO of ETHOS.  ETHOS is a ‘mainstream’ care provider who support people in their own homes.  They have been instrumental in forming the LGBT aging project and was really great the hear Dale’s perspective.  I am going to have to really take some time out just to consider all the different perspectives I’m hearing.

I then navigate my way back to the hotel to write up some notes and generally process stuff before heading out on the bus/train to the Hebrew Rehabilitation Centre where I met the lovely Rabbi Sara.  This centre is enormous by UK standards.  Sara and her team are working at rolling out LGBT sensitive care across the whole of their service.  I can’t wait to find out how this work progresses and have made some great contacts here.

Hebrew rehab

From here it was a bus ride back to join an elders of colour community dinner.  I arrived before Bob but was made to feel so welcome that it really didn’t matter.  This is a monthly dinner which is hosted by Whittier Street Health Centre and it is fab.  It has such a great vibe and the room was all decked out for Valentines.


I met such lovely people who were so interested and supportive of the Fellowship it was just great.  Bob left before me as I was so busy chatting to people.  I have everyone’s details and promises of keeping in touch.  After dinner of salad, pulled chicken and potatoes, there was news of an upcoming theatre trip, a talk by a new clinician working within the clinic – who handed out Valentines candy, my GP never does that….  We were then treated to a seminar about the importance of humour in older age.  I was lucky enough to have a key ring under my valentine’s card which meant I won a bag of goodies 🙂

Goody bag of loveliness

I was introduced to such an great group of people, it was just a joy to have so many interesting conversations, especially as I am so far away from my loved ones on Valentines.  I met a wonderful woman called Eugenia who had only recently retired and I was told was such a powerful advocate for better services in the area.  I love meeting women who change the world.  I feel like I have met a legend.

I was slightly concerned because I had to make my way back on the train and it was getting later and later.  I feel totally safe here but three women offered me a lift to the T station and I was grateful.  I left the dinner feeling the love.

We walked to the car park together and I was put in pride of place in the front.  Then the hilarity began.  If one of my kids got into a car with a bunch of strangers I would be furious with them!  Anyway, we started to drive out of the carpark but the ticket didn’t work.  Her wife couldn’t get out of the back because the door lock was malfunctioning so there was all sorts of silliness trying to get people in and out of the car.  Luckily, someone pulled up behind us who had a fob for the barrier and we were out.  We were then heading off towards the T when it was decided that they would just chauffer me back to my hotel.  All three women had a different idea of how best to navigate to my hotel and I did comment that this might be the most inept kidnapping attempt ever.  So much fun and laughter in that car this evening.  I was safely dropped off right to the door and I very much hope to meet these wonderful women again someday.

I arrived back to my room still with a big grin on my face from such a wonderful evening and was welcomed back with this by the world’s friendliest hotel:

Hotel chocs


Lost gloves and heartache

I’m of an age where gloves feature large in my life as an essential accessory.  I guess this happened when I was about 43 before that I was so hip not even weather could get to me.  Now I’d rather be comfy, which mostly means warm.


I have gloves for different occasions – there are the emergency gloves I had to buy when I was Christmas shopping in Camden with the best boyfriend in the world, then there are my driving gloves that live in my car, knitted silver yarn with yellow (my fave colour) which have rainbows bought for me by Sheryl, the beautiful long length black leather ones which make me look like a dominatrix or that I’m about to handle something corrosive. Then there are my everyday gloves.  Dark blue faux leather which are scuffed and worn.  When it rains and they get wet the dye comes off on your hands and you spend the day explaining your frozen looking hands to people.  These are now also my ‘Boston’ gloves.


I woke up this morning and couldn’t find them.  I have returned to my hotel in between appointments just to look for them.  I lose things all.the.time.  My brain just doesn’t retain information like where I last had a thing.  I end up replacing everyday items with amazing regularity.  But these worn out hand dying gloves cannot be replaced.  My Dad bought them for me and now he’s dead so they have been elevated to my most precious things.


On this Valentine’s Day, text your loved ones – including parents, grandparents, children, chosen family, whoever makes your heart bigger – because when they are gone it will hurt you in ways you cannot even imagine.


I found the gloves.  I had chucked them in a shopping bag with some souvenirs so everything is ok again.  Now go, tell those you love that you love them xx



Boston Bits

I have arrived safely in Boston and am completely in love with the place.  I had a pretty dreadful flight here from San Fran, turbulence, over-crowding, nowhere to stow hand luggage, stuffed right at the very back of the plane where we were served last by the grumpiest Steward I have ever known.  As we were the last to be served, the Steward explained he had run out of cutlery so would we mind sharing – really!  You can’t go anywhere without tripping over a hand sanitizer in SF and the current flu epidemic is making people even more anxious, so no, we will not be sharing our cutlery.  I opted for the cheese and cracker option…


It was with slightly heavy heart that I ventured out into the cold, dark rain on my very first visit to Boston.  The airport shuttle was waiting and my driver was nice enough but not very chatty.  I was up to this point not overly impressed.   Then I got to the world’s friendliest hotel and all was well with the world again.  My room is nice enough, I screwed my nose up when I realised there were no tea/coffee making facilities in the room but complementary refreshments are served in the lobby.  I wasn’t initially enamoured with the idea of having to get dressed to pad down seven flights of stairs for my morning brew but I love it now.  I am greeted with a cheery good morning by the housekeepers, on the first day I was asked how my night was, I explained I was in a slightly different time zone still and was cheerily told to take my time.  The reception staff are equally cheery and helpful.  I live with teenagers.  I’m lucky if someone grunts at me in the morning.  I could easily get used to hearing ‘have a great day ma’am’ every time I leave a building.  When I return the concierge guys out front welcome me back – even if I just pop to Star Market next door.  It’s not at all cheesy – it’s lovely.

Fenway Health

Initially I had planned to meet with folks from the Fenway Health but Bob needed to have some dental work so this was postponed until Tuesday (today).  I was so grateful for a day to catch up.  My inboxes are overflowing already despite my best efforts and I have little time to write up all my experiences, adventures and meetings.  I did manage to walk to the Cheers bar and buy some souvenirs which was really the only thing I’ll have time for sightseeing wise.


Today was spent with Bob and Lisa from the LGBT Aging Project within Fenway Health.  In contrast to San Francisco where every other building is a gym, in Boston every other building is a café (my kinda town) where Bob, Lisa and I met and had some lovely, insightful conversations about working in the LGBT space, the challenges, the gains, collaborations and who else I should try and link in with.  I could easily spend another month here making links.

I’m deeply grateful for the time today, my head is again buzzing with ideas of how I can bring this knowledge and understanding back to the UK to have a positive impact.  I was even more fortunate that Bob, Lisa and some of their colleagues are moving so they were keen to offload some bits and pieces including this – which I love!

They were even polite enough to give me a small, that’s how lovely people are here.  I hot footed it back to the hotel – I cold footed it back to the hotel, it’s -3 here – to write up notes and plot more fabulous plans based on today’s discussions.  I wandered over to the shopping centre opposite the hotel in search of gifts for ungrateful teens.  I got a bit excited to see a Neiman Marcus in real life, I’ve only ever heard of it on TV before  I can’t afford anything from aforementioned store so left.  I did drool at the window of Jimmy Choo for a while though before bracing the elements in search of a subway.


I’m a huge fan of travel cards and by far the best way to get to know a place is to travel by bus.  You get to meet the most interesting people that way.  On my last day in San Fran, I met a really interesting chap who introduced me to three of his personalities, they all seemed nice and he gave me some great tips on travelling to New York.  It never ceased to amaze me that pretty much everyone I met talked openly about having a therapist, except the people I met on the bus who I suggest would greatly benefit from some psychological intervention.

Charlie card

I bustled down to the subway – you have to bustle here or your ears drop off from the cold – and in my own bumbling inept way could not get to grips with the top up system of the travel pass.  It’s called a Charlie Card here which again is just a lovely friendly name for it.  I sent a photo to my step son, Charlie.  (I’m never sure if I can use the term ‘step’ children as G and I are not married but for brevity I’ll use it here in the hope that it will not cause offence to anyone and because to say ‘the son of my boyfriend’ makes me sound a bit grandiose).  With my Charlie Card I can travel any bus or train except the commuter line.  I have no idea what that is but have three appointments spread across town tomorrow so will suss it all out by then.  I’m such a chilled out seasoned traveller now.


The nice lady in the subway who probably has to deal with people like me visiting and not knowing what the hell they are doing all day was super helpful.  By which I mean she assessed me as very needy and did the whole transaction for me including paying with my bank card.  I wasn’t sure how the Charlie Card worked – some travel cards you swipe on but not off, some on and off, some you just flash at the driver – so asked for some clarity.  These you swipe against a reader on the barriers.  She made me swipe and go through.  I didn’t actually want to travel anywhere but I got on the next train because I’m British and would rather pretend I wanted to do something than let a helpful person down.  So I went to Arlington for a bit, then took a return train which took me out another exit and so helpful lady never knew.  Sometimes it is exhausting being British.


Walking back I found a lobster shack.  Not where actual lobsters shack up but where you can go in and eat something called a lobster roll.  I’d heard talk of these and wanted in.  They are delicious and I’m going back.  Obviously, I’ll have to wait until staff changeover because they might think I’m a lobster roll addict or something.  Here it is (totally acceptable to photograph food for a blog kids, just saying) The pickle was free 🙂

Lobster roll


I missed out on the complementary hot chocolate from the worlds friendliest hotel but the lobster roll made up for it.  Chatted to the family earlier and everyone is surviving without me, which is good.  Remember kids even when I’m not in the country I know what you are up to, don’t forget that.  Always watching, always (Roz, Monsters Inc)


Busy day planned tomorrow and tired out even though its only 9pm.  Bob has recommended an evening stroll around the Italian quarter, but I’m pooped so that’ll have to wait another day.  Big love from Boston x


LGBT+ Dementia care training, Chinatown and secret gardens

Was fortunate enough to experience some cultural humility and dementia care training yesterday back at OpenHouse.  I like the cultural humility ethos, but there were some differences between the way we work in the UK with those living with dementia and the tenet of the training.  Attendees were encouraged to say yes to all the demands and requests from the person with dementia, therapeutic (compassionate) lying appeared to be the norm and there was talk of offering hope in the face of the diagnosis.  Attendees were healthcare professionals who mostly worked in care home facilities from what I could gather, with a couple of exceptions.  Examples of residents not being told that their loved one had died and distraction appeared common.  Pretty interesting to note the different approaches.


Nice walk in the sun to the next appointment with the lovely Stu Maddux. Stu is a film maker and executive producer.  He produced a film called Gen Silent which was shown at the LGBT conference I attended in Melbourne on the first leg of my awfully big adventure.  Gen Silent is a beautiful film which talks of the concerns and anxieties of the LGBTI+ elders as they age.  Here is a link to the trailer –   I would urge people with funding to watch it and find ways in which this film can be shown more broadly in the UK.

Stu works in the heart of Chinatown and generously offered to show me around while we chatted.  He explained that the water line used to be at the same level as this building!

SF Shard

Walking around San Francisco you can’t help but be in awe of the resourcefulness of those pioneers who decided to build here.  The Bay was bought under control so that they could build on it.  Apparently old ships were used to secure water lots in the age of the Gold Rush and so beneath the finance district there is a whole fleet of ships.  It’s weird to think that San Fran was little more than a small town in 1848.  My house back home was built in 1860 – we have a different sense of history, for sure.

Stu navigated us towards a tall building to ride to the 15th floor so we could take in the sights from a little-known patio.  I’m so grateful for the experience and definitely not one I would have had left to my own devices.  Stu has plans to make three further films, the first addressing loneliness and aging.  I’m hoping we get to meet again in the future.  We walked back to his offices in Chinatown and he wished me well and gave me a hug.  Not for the first time on my travels I realised that this was the first hug I had had since leaving home.  I walked away wondering how I would cope in isolation or in a care home which monitored and managed by intimate behaviour…

I wondered back through Chinatown and found the secret patio building again, this time taking photos of the views and the marketplace.

So that was that.  All the meetings are done, my brain is fizzing with the new knowledge and insights I have gained from this most duplicitous of places.  I have met with some genuinely lovely people and am now looking forward to Boston.  I’ve just had an email suggesting that we have a friendly chat over bagels and coffee before I get to meet all the people at the Fenway Institute.  I think I’m going to be just fine 🙂


A warm welcome from OpenHouse and Alzheimer’s Association

Yesterday saw me heading out to Laguna Street to meet with Duff Axsom (coolest name – ever!) and various colleagues to better understand the work that OpenHouse do.  My understanding is that OpenHouse has been running for 20+ years and started as a housing support organisation for the LGBT+ community.  Since then it has grown and broadened its support to include more direct support services and community programmes.


OpenHouse has 39 apartments onsite and is in the process of building a further 79 apartments.  The waiting list is in the hundreds and currently closed.  The need for affordable housing is evident in San Francisco.  I heard accounts of how the lack of affordable housing meant that it was almost impossible for those who have moved away from San Fran hoping to move back.  It also means that selling up and downsizing is not an easy option so people are encouraged to keep their own homes for as long as possible.  San Francisco has some really beautiful buildings but it is not an easy place to be if you have mobility problems or frailty.  Often old apartment blocks either don’t have a lift or it frequently breaks down.  OpenHouse offer a volunteer befriending service to alleviate the isolation felt by some people.



OpenHouse has a broad remit, I saw a support group in action to help people who struggled to de-clutter their homes, I heard about cultural humility training, the support group for people who care for somone with a dementia, health and wellbeing support and how residents are encouraged to host groups too.


It was an absolute joy to meet and talk with Amy, Sylvia, Manuel, Duff, Jess, Ariel and Michelle.  Each person was very generous with their time and influenced and informed my thinking.  I am delighted that a new programme called ‘Embracing sexuality in older age’ (or something similar, sorry if I haven’t quite remembered the title) is being rolled out in a couple of weeks.  I’m hoping to keep in touch with OpenHouse to see how that programme is received, but it sounds like it’s going to be popular J


I am very grateful to Duff for organising my day.  I had great conversations with everyone and was made to feel very welcome.  I definitely feel more at home in more subversive environments J  Thank you OpenHouse x

Alz Assn

Today I headed off to the Financial district to meet with the Alzheimer’s Association to speak about their LGBT Dementia Care Project.  We had an interesting discussion about how to access and engage with organisations.  I found out that there is mandatory dementia training in SF which must be undertaken before and after staff have started working with people with a diagnosis.  Apparently, in SF you need 400 hours of training before you are allowed to work in a nail bar, but you can care with someone with dementia after only 4-5 hours training.  Good to know that the issues around getting staff released for training is just as difficult here as at home.  Looking forward to attending the training tomorrow at OpenHouse.  Tiring but great couple of days.



It’s a care home Jim, but not as we know it…

Today started early with a longish bus ride out to AlmaVia San Francisco care home. I had been in touch with AlmaVia because they had featured in a blog which cited them as particularly LGBT inclusive. It was possibly the biggest and most beautiful care home I have ever visited. I was welcomed by John and Carmel and their team and enjoyed a long conversation about what inclusive care looks like, the differences and similarities between the USA and UK in terms of mental capacity and the importance of intimacy in holistic care. The staff at AlmaVia work at understanding their own prejudices and preconceptions about intimate expression among residents and have training and open conversations. The key to their ethos of inclusive care is communication and partnership working.


We talked – in a really beautiful dining room – about how intimacy is common behaviour among residents that this provides a sense of connectedness which is important to wellbeing. Should residents demonstrate more amorous behaviours the staff would then consult with the family and work at enabling the family to support the resident to meet their needs. As in the UK, it can take adult children a while to be comfortable with a parents sexual expression, especially where dementia is present.

The striking thing about AlmaVia was the calm and quiet atmosphere during my visit and subsequent tour. It was pretty grand and quite different from the majority of care homes I have visited in the UK. There is a startling difference between the business model and the social care model. I would argue that we must be careful in the UK not to move too much towards the former.

I wasn’t too sure how long my visit had been scheduled for and it being the appointment which was furthest away from where I am staying, I had given over the whole day to it. When I left just after lunchtime, I took the opportunity to go exploring a little. I started to head back to the hotel, but remembered I had wanted to visit the GLBT History Museum, so headed back a couple of stops on the bus/train. I found myself in the Castro district which has such a great vibe, I wondered around feeling very much at home amongst all the boutiques and cafes. I found the museum, which is closed on Tuesdays, so will have to find a bit more time later in the week.

I have been thinking about my family a lot today. I received an email this morning telling me that Wonder Boy had been burnt with a hot teaspoon by another pupil. He is ok, college staff have dealt with the incident and this will be written up on the other pupils record, but I am a long way from home. Incidently, to the young person who hurt Wonder Boy, I am the Liam Neeson of mothers. I do know who you are. I don’t know what you want. If you are looking for a ransom, I can tell you I don’t have money. But what I do have are a very particular set of bassass skills, skills I have acquired over a very long-time mothering. Skills that make me a nightmare for people like you. If you stop hurting WB, that’ll be the end of it. I will not terrify you every time I see you, I will not pursue you. But if you don’t, I will look for you, I will find you, I will insist on your parents being present at the meeting I will hold. Just saying.

Anyhow, home has been on my mind and Wonder Boy in particular. So with time on my hands I hadn’t planned for I trekked off to find Mrs Doubtfire’s house. WB LOVES Mrs Doubtfire so I hope he appreciates the effort. Lovely area down there in the Cow Hollow region, a bit too nice in an eery kind of way, but hey that’s probably just me 🙂

Mrs Doubtfire house

From there it didn’t seem too far to visit the windy road that is a section of Lombard Street. Again, WB would love this so took lots of photos for him. Don’t worry chickens, I’ll be home soon xxx

Windy Road

From there I got a bit lost, but have downloaded this lifesaving app called Moovit which tells me where I am, where I need to go and how to get there in so much detail that even I can’t stay lost for long. I have walked for miles and miles and miles. My plans went from going to the gym when I got back to the hotel, to going to the bar when I got back to the hotel, to actually abandoning all other plans and putting on pj’s and writing up.  Happy Tuesday everyone x



Made it Ma, top of the world!

The second leg of my awfully big adventure saw me flying into San Francisco late on Friday afternoon.  There was significantly less anxiety this time around as I knew my children and the best boyfriend in the world could survive without me as we discovered when I disappeared off to Australia for a month.  It is still a bit of wrench, but I quite like long haul flights now – no emails, people just give you wine and I watch more movies then than I do any other time in my life.  The jet lag is negligible.  I wake up at around 4am but I do that at home too.  I hope this does not mean that I will suffer when I get home…

The shuttle service from the airport was an adventure in itself.  I opted for the shared shuttle service as it’s the cheapest and not having the luxury of family waiting for me (like in Oz) and a notoriously awful sense of direction I thought it safest just to pay someone to deliver me to my hotel.  I knew that San Francisco was hilly, I mean, I’ve seen Steve McQueen in Bullet, but I had no idea how hilly.  I’m not a roller coaster kinda gal so opted for the ‘don’t look down’ approach during some parts of the journey.  I’m also not at all religious but found myself saying a small prayer to the God of brakes and clutches.  When my fellow traveller wished me luck as we dropped her off first, I knew I wasn’t the only one holding on for dear life.


The hotel receptionist could not have been nicer.  She asked me where I lived in the UK, I usually say not far from London when I’m anywhere abroad but explained I lived in a small town near MK.  It transpired her sister lived in the exact same town.  What are the odds!  We had a lovely chat about her sister and I found myself being offered a room on the top floor instead of near the middle where my original room was.  The view from my room is just amazing.  The pics don’t do it justice, but I can see out across the bay and I am intoxicated by the night time view.  For someone who is slightly ADHD the twinkly lights are just so much more interesting than telly.  It’s like having the biggest big screen TV ever 🙂


I unpacked and took a walk around just to get my bearings.  I wasn’t at all hungry, having eaten seemingly endless meals and snacks on the plane so I just chilled in my room and waited until it was a reasonable time to go to bed, despite the fact that my body was telling me it was 3am in the UK.


Saturday saw me hitting the hotel gym because when in California and all that.  Gyms are big here.  Walking around there are endless gyms in amongst the shops, the open doors (it’s also very warm here right now) give you a glimpse of people running, pumping and sweating through workouts.  Health is a big deal here.  They have a channel called Beachbody TV!

I needed to sort out some vitals.  A travel card so I could get around, some food basics – I have a fridge in my room and the cost of breakfast was ridiculously expensive so, as I mostly only eat yogurt for breakfast I stocked up, water, milk, some trail mix – I’d never had this before, but I now eat bags of the stuff!  I sussed out the laundry, thankfully the hotel has a guest laundry as I packed much more sensibly for this trip, mindful that people will give me lots of printed information and that the children will all expect gifts, so I left a little room in my case.  Travel cards have been essential wherever I have stayed and in San Fran you need a Muni card.  I got horribly lost around Chinatown looking for the bookshop that sold them, but getting lost is absolutely the best way to explore a new place.  Eventually found the bookshop, but they no longer sold Muni cards J  Maps are also vital so found the Tourist Information office and got myself a route map.  I also needed a different SIM card.  I had planned ahead this time, taking one of the kids old iPhones so I didn’t need to keep changing SIMs when I wanted to phone home.  Luckily the hotel is right next door to a T-Mobile shop so that was easily sorted.

Saturday was definitely a day of walking, but I kind of sussed out the place a bit too.  There are some startling differences between here and home.  Everything is more expensive than you think because they add taxes on after you pay for something.  Homelessness is a big problem, I’ve seen people being shooed away from café entrances for asking for food, people with evident mental health problems being ignored and begging, lots of begging.  It’s pretty different to the ads we see at home about Californian life.  I have found that a bit hard to be honest.  Other cultural differences include tipping for everything, but I was given solid advice about this by my brother who lives in Phoenix – good service 20%, mediocre service 15%, crap service 10%, don’t tip in coins, tip bar staff for every drink they serve, even if it’s just a dollar.  I’m getting the hang of it.  Slightly weirder differences – there are quite big gaps around toilet doors.  This might be oversharing but it’s a thing.


One of the things I find hardest when away is knowing what the shops sell.  At home we all know Tesco, M&S, Boots but when you are abroad you have little cultural reference.  I wander into places which I think might be a little grocery store only to find it sells art supplies or something.  Because I’m British, I pretend I totally want to look around at all the art supplies so spend 15+ minutes browsing in a shop I don’t want to be in before making a face that is supposed to depict ‘oh you don’t have the art supplies I wanted’ and walk out.  Please tell me I’m not the only one who does this.


I digress.  Having settled in a bit and survived the first couple of nights, even taking myself out for dinner, I decided that Sunday would pretty much be my only sightseeing day so I headed over to Alcatraz by ferry.  It is an amazing place and well worth the trip.  As I listened into the audio tour, I couldn’t help but think how being trapped on an island reflected some of the conversations I have had with older people living with dementia. At the very end of the audio tour there is this quote from a former inmate which really did resonate with some of the comments I’ve heard:

“and I’m watching the cars whizzing by and the people walking and everything was moving too fast and I didn’t know how to move with it and then I remember how envious I was of these people, they all had a destination, they are all going someplace and I didn’t know where I was going.  And I was scared to death.”

This image and quote also resonated, it never ceases to amaze me how you think you are going off to do one thing but it informs your thinking about your research, even if those thoughts are a bit tough.  Thinking time is so important and something I see less of at home with the pressure to always churn out a ‘product’, there seems little space for creativity.

It was all there for you to see

Monday has seen me coming to terms with my route map and heading off to visit with the very lovely Jason Flatt and Amy Mack (who should really be a rock legend with a name like that).  Jason and Amy work at University of California, San Fran in the Institute of Health Aging.  We had very interesting conversations around health disparities and the LGBTI+ community, sexuality and dementia, screening, training, human rights and came up with loads more questions than answers J  Jason and Amy have a long to do list of projects but I’m very much hoping that we could link in with Australian colleagues at some point and put a project together to further our research endeavours.  Mind buzzing with opportunities and options.  A fabulous day, the sort where I think maybe a career in academia wouldn’t be so bad 🙂

Jason & Amy


Wonder Boy, the DWP and me

Today Wonder Boy and I attended our first DWP assessment, well technically, our second but I’ll come onto that in a minute. The DWP – Department for Work and Pensions – assesses anyone who receives benefits from them.  Wonder Boy receives a benefit called Employment and Support Allowance or ESA.  ESA is paid to anyone who is ill or disabled and ‘offers financial support if you are unable to work or personalised help so that you can work if you’re able to’ (Gov.UK, 2017).  Those eligible for ESA are streamed into one of two categories, a work-related activity group and a support group.  Essentially the work-related activity group is for people who are likely to be able to work with the right amount of support and the support group are those who are deemed ineligible for work.  WB would fit into this latter group.


We have put in a claim for ESA on the advice of another parent carer – all the best advice always, always comes from another carer.  I have NEVER had benefits advice from any professional we have come into contact with EVER.  I think it’s Government policy to keep potential claimants in the dark about their entitlements.  Anywho, we put in an application for ESA and WB was awarded.  It’s not a massive amount of money, about £75 a week, but to WB it is a small fortune and for the first time in his young life it means he has spending power JUST LIKE OTHER YOUNG PEOPLE.  He uses it to buy snazzy clothes to wear when he goes out on dates, to buy Christmas and birthday presents for his family, to buy things he likes (drones mainly, although saving for a tractor, probably a Fergie (don’t ask)) and more recently he has asked if he can take his siblings and step siblings out for a swanky dinner.  He is wonderfully generous, which makes him a bit vulnerable so I keep an eye on the finances for him through a deputyship- see earlier blog about signing up to dating (turned out to be porn) site.


In order to catch benefit cheats and fraudulent claimants WB and people like him have to go for work capability assessments, just in case their life long disability cures itself and they are no longer facing their daily challenges and could potentially work.  Now there is an important point I would like to raise here.  You have got to be pretty fricking desperate to pretend to have a disability in order to get benefits.  I’m not condoning it in any way but I’m suggesting that to employ assessment officers to assess the 99% of GENUINE disability benefit claimants is just a waste of time and money.  According to SCOPE (2017) ‘Disability benefits have the lowest levels of fraud – Disability Living Allowance (DLA) fraud represents 0.5% of the total amount spent on this benefit’.  Just 0.5%.

So why do we make such a palaver out of it?  Mainly because public perception about benefit fraud is skewed.  The general public overestimate the number of fraudulent claims enormously (see Geiger’s paper ‘Benefit ‘myths’? The accuracy and inaccuracy of public beliefs about the benefits system’ for further information).  Citizen Advice Scotland posted an article entitled ‘Myth-busting: the real figures on benefit fraud’.  In it the CAS state that the UK Government paid out just under £1.6billion in fraudulent claims in 2012.  That is a SHED LOAD of money, but equates to less than 1% of overall benefits and tax credits.  If we compare that to benefits paid due to claimant/official error (£2.2billion) or tax fraud (£14billion or 69% of all public sector fraud) you can see why I’m a bit miffed that I have to go through this ordeal with WB.

The original appointment was scheduled for a Wednesday.  This is a college day for Wonder Boy so I contacted the DWP to reschedule the appointment.  We couldn’t make the only other appointment they offered us and their system only runs in two week blocks.  I then had to note in my diary that I needed to follow this up again the following week.  I know this is a minor inconvenience, but I add it to demonstrate that my life as a carer is a life interrupted.  It is a constant battle to remember all the bits of paper I need to gather, all the appointments I need to book, the services I need to follow up on and that is before I even hear about the new things Wonder Boy wants to try, places he wants to go, people he wants to see.  I work as much as possible and would love a full-time job with sick pay and holidays and a pension and colleagues and works do’s and security and meaning, but I am too conscientious (which used to be valued in the workplace).   I know that at least one day a week will be spent ‘doing carer admin’ and I worry that this will not be thought of very highly by a new employer.   Note to the DWP: if you want to improve things for people with disabilities and their carers provide an appointment diary that runs for more than a fortnight.

I duly contact the DWP to reschedule the appointment and agree the 30th November.  I know this because I write everything down as people tell me things.  My perimenopausal brain can’t remember things like it used to and I don’t trust the buggers.  Wonder Boy requested that I support him with his appointment which is fine, I can rejig my week to accommodate that – which basically involves me accepting that those hours are lost in my working week and that I will probably have to work at the weekend.  I also have to notify his carer support worker who would normally work with WB on a Thursday – more phone calls to care agency, double checking with care worker, more tasks to remember/do.  I, in retrospect stupidly, booked a social work visit for early that morning to avoid having to take more time off.  Double booking Wonder Boy in for appointments just does not work – lesson learned.

Wonder Boy really didn’t want to attend the DWP appointment so there was much cajoling and over friendly “it’ll be ok’s”.  On arrival – city centre location, expensive parking duly paid – we were told that we had been booked in for the following week and not the 30th November after all.  I explained that I wrote down the date as the appointment was made, but ‘computer said no’…  We had to take a seat so I could claim back the expensive parking, or at least fill in a form which will need to be processed.  With WB grumbling about wasting his time next to me, I looked around at the others in the waiting area.  No one was there alone, all had support.  Almost everyone had a physical disability, all looked pretty fed up.  We filled out the form asap – WB had to sign it which almost tipped him over the grumpy edge and we left, happy to be out of such a depressing space.

The day unravelled after that, complicated by the fact that on the same day my partner had to attend a family funeral.  I wasn’t able to support him through that because of the appointments, not for the first time and certainly not the last time I have had to choose between attending appointments and being there for people I love.  The people I love draw the short straw most of the time.  We really pushed our luck and went shopping with family which should have been lovely, but was all a bit too much as the subsequent minor meltdown in a restaurant showed.  It is a testament to my wonderful step children and their extended family that this is taken as part of life’s rich tapestry but on reflection of such events it does cross my mind that they might wonder why the best boyfriend in the world sticks around with us.  But we got through it.

Fast forward to today and appointment attempt number two.  Wonder Boy’s carer support worker duly notified that he is not needed until later, more admin and off we go.  It was much quieter this time and we were greeted by no less than 6 members of staff staring at us from behind what appears to be bullet proof glass.  Wonder Boy does NOT like to be stared at so I am desperately hoping they will stop looking at us.  WB had to produce some ID and sign forms.  I had booked the parking through a phone system so WB had heard me booking 90 minutes and was strongly and swearily declaring he was not going to stand for this for 90 whole minutes.  I adore him when he’s like this, his honesty levels reaching heights only us neurotypicals can dream of 🙂

We were kept waiting for a few minutes.  WB does not like to be kept waiting and so grumpiness was quickly setting in.  I over compensate by being super cheerful, so much so that I begin to hate myself.  During our wait, I reflected on what an absolute waste of time all this was.  But it’s more than that.  A middle-aged man with Down’s Syndrome came out of one of the assessment offices with a carer saying “It wasn’t that bad, it was ok, it’s good now it’s finished, it wasn’t that bad, was it?”  My heart went out to him that he had clearly been worrying about the appointment and was so glad to be allowed out.  I wonder if the assessor viewed this person as being eligible for work.  A young woman came in with a support worker from the local authority, she tried to book in but had to explain twice that she was deaf and could not hear the instructions.  A husband pushed his wife in her wheelchair to reception where she was asked to sign the form even though she had clearly had a stroke or something similar which rendered it difficult for her to sign anything.  They were an hour early because they had to travel – there are no tea/coffee facilities so they left the building in search of somewhere less gloomy to wait.  The inconvenience, anxiety and sense that we were having to show proof of the things that you didn’t want to define you as a person, were palpable.

We were eventually ushered into an office by a really lovely assessor.  She explained that she was a nurse and that she had read the notes, sensing WB’s lack of enthusiasm for the assessment she promised we would be processed asap and sent home.  She asked WB when he received his diagnosis, he has no idea as he was very young at the time, so I explained that we had an initial diagnosis of ataxic cerebral palsy when WB was about 8 months old following referral at his 6-week developmental check, later a diagnosis of Deficit in Attention Motor Control and Perception (DAMP) and at about 5 or 6, Autism, much later at 18 he was accessed as having low IQ but not quite low enough to be classified as LD for service provision purposes.  “Ah, I can’t do this assessment then” said the lovely nurse “Because he had a diagnosis of Ataxic cerebral palsy that makes you a complex neuro case.  I can’t do those.”  I tried to explain that this was a very early diagnosis, that you wouldn’t know WB has CP now, that this does not affect his activities of daily living unless he is to be a professional runner, in which case he has a slightly unusual gait…. “No, sorry, I can’t do this.  I’ll have a word with a colleague.”  She left the room.

During her absence WB told me what an absolute “fucking waste of time” this is, whilst totally agreeing with his every word, I focused on assuring him things would be ok and that this was just a blip. “I’m not fucking coming back again” he declared.  I hoped the people in the waiting room couldn’t hear us.  The lovely nurse came back and said that a colleague could see us, that the colleague was lovely and more importantly, quick, so we would soon be on our way home.  Wonder Boy said “fuck”.

We were kept waiting even longer in the depressing waiting room, even the Yucca had given up hope and was wilting in the corner.  WB grumbled about not enjoying this, me FORCING him to go through this rigmarole, him having plans for the day that didn’t involve sitting in a bloody waiting room, that the nurse had said her colleague was quick, but he wasn’t bloody quick as we were still waiting.  I promised him a Costa if he would just go along with the assessment.  He only drinks Americano’s so this was a big deal for me, £2.65 for a bloody black coffee – daylight robbery.

Even I had given up being overly cheerful and was beginning to feel a bit fed up.  “Oh, and don’t mention my autism” says Wonder Boy.  “I have to mention your autism, love, that’s what the assessment is about.”  “Well, I don’t want you to, it’s nothing to do with anyone else, least of all these strangers.”  I gently tried to explain that he liked having the £75 a week, that it meant he could do stuff he wanted to do like other 21 year olds, that we all had to do stuff that we didn’t really like sometimes, that this was just part of being an adult.  He didn’t buy it.  I’m fed up being thought of as the bad guy in all this by WB.

We were called in.  Another nice assessor, who explained why the assessment was going ahead.  “Let’s list your conditions” said lovely assessor.  “Or not” says WB.  This is going well thinks I.   Once we got over the whole, so what is your disability game, WB decided he wanted to answer all the questions himself.  No problem, he should be actively involved in his own assessment.  “How did you get here today?” asks lovely assessor.  “That’s a stupid question, what’s that got to do with anything?”  Maybe I’ll get something from Costa too…

Wonder Boy is just warming up though.  Assessor: “Do you use the bus at all?”  WB: “Yes” Me: “He uses the bus at college as part of travel training, but not independently” I had to chuck that in, even though WB glared at me, but WB is right, that is a stupid question to someone who is a rigid and literal thinker.  The point of the assessment is to determine the extent that an illness or disability affects activities of daily living in order to make a judgement about capacity to work.   WB’s ‘yes’ implies that he is an independent traveller who can get himself from A to B on public transport.  This is far from the truth.  He could get himself from home to his Nan’s house – one stop – where his Nan would meet him at the bus stop because he has a tendency to wander off and get lost, not all the time, but enough times to make his family worry. He has travelled on the bus to his Nan’s twice in his 21 years.  Technically, he uses the bus…

Assessor: “who is at home?”

WB: “I don’t know, I’m here, I haven’t got super powers”

Me: “He means who lives with you at home?”

WB: “Why does he need to know that?  Does he think I don’t know?  I’m not stupid!”

Assessor: “who cares for you?”

WB: “Mum and Steve my support worker”

Assessor: “Anyone else?”

WB: “no”

Me: “And Howard”

WB: “Howard isn’t my carer”

Assessor: “Who is Howard?”

Me: “He is our PA, we have him on a Friday”

WB: “I WORK with Howard, he’s not my carer.  I do gardening with him”

Me: “WB prefers to use positive language about the activities he does, but Howard is employed as a PA which is paid for by direct payments”

WB: “wish you wouldn’t make everything sound like I can’t do things Mum.  I can do things, but you don’t let me, I can cook and use the bus but you don’t let me”

I’m definitely getting a Costa…

The lovely assessor leaves the room to discuss with a colleague.  I am grateful that he noted my slight side to side movements indicating ‘no’ when Wonder Boy was steadfastly say ‘yes’ to some of the questions.  I hate that I have to focus on the things he struggles with.  WB is so much more than his deficits.  The assessor returns.  Wonder Boy makes a surprise announcement “Can I change something please.  I said that I do things independently.  I don’t, someone helps me all the time”.  The assessor tapped something out on the keyboard and explained that this assessment would be sent to a ‘decision maker’ and the DWP would notify us of the decision in three to four weeks.

So, if you are thinking that claiming disability allowances sounds like fun or that we all get £25 grand a year, a free house and live the life of bloody riley I challenge you to take WB to his next assessment and see how you like it.



If you work with Sydneysiders, you better like coffee and cake…

My time in Sydney is almost at an end.  I have an hour or so this morning to blog something then I’m off out again to visit University of New South Wales to look at the work they are doing around developing an eLearning resource specifically for those supporting LGBTI people who present with BPSD (Behavioural and Psychological Symptoms of Dementia).   I cannot thank everyone enough for their time, generosity and positivity.  I’m really looking forward to spending time with UNSW today.


I arrived in Sydney a bit later than expected due to a flight cancellation.  I had no time to suss out the neighbourhood and only had time to let my lovely partner know I had arrived safely (he worries about it…) before crashing out in bed.  The next day saw me visiting by Carrie Hayter who runs her own consultancy business and Samantha Edmonds from the National LGBTI Health Alliance.  Both insisted that we chat in one of the million cafes in Newtown.  My chai addiction is now totally out of control 😉


Carrie is just fabulous company and knows everyone!  She has provided me with such great contacts which I can follow up with when I’m at home.  She even suggested that we put together a symposium at a conference in 2019.  I’m saving for my return ticket already.  Carrie is the Vice President of the NSW branch of the LGBTI Ageing Interest group and works closely with the Australian Association of Gerontology and was able to give me a great insight into the current political landscape in terms of aged care.  She has such a vast amount of experience in the care sector generally that knowledge and wisdom just flows out of her.  I very much hope that we get to work together on something in the future.  She’s just fab.


Then off to meet with Sam at another café.  Very grateful to have this meeting as Sam was only in Sydney for a few hours before jetting off somewhere else.  Even with suitcase in tow, she found the time to chat with me.  Sam is leading on the Silver Rainbows project, an LGBTI inclusive aged care initiative.  We talked about the political and legislative changes which have enabled this project to continue and the challenges of changing attitudes through training a large workforce.  I am beginning to get a much firmer grasp on what needs to be in place to achieve inclusive care.  Government backing, funding, project leads, fair representation of those who are being supported, accreditation, ongoing change.  It’s a challenge but do-able – hopefully in my lifetime.  My head spinning with new information, grand plans and hopes to make a difference I took myself out to dinner and headed back to my hotel for an early night as I had a very early start the next day.


The following day, bright and early I headed off out for a day at Uniting.  Uniting are a very large faith based care provider.  They were one of the first organisation – and I believe the largest to date – who obtained their Rainbow Tick Accreditation.  The wonderful Fleur was my chaperone for the day and had worked out an amazing timetable of events – I was glad to see that we ended up in a bar at the end of the day!


During the course of the day I met some fabulous people who talked with such passion about inclusive care and answered all my questions fully.  Probably the highlight of my day was meeting with Bernette who talked about how supported she felt living in a Uniting home.  Bernette took us to a local Portuguese café where we enjoyed a delicious lunch whilst she told me about her history as one of the 78ers and how proud she was to have been able to attend the Mardi Gras recently – photographic evidence of which hangs pride of place in her residential facility.


On my whistle stop tour I met with Tony who is responsible for training who talked me through the training packages which were being rolled out prior to the Rainbow Tick and continue to be included in induction, online and as refreshers throughout the work force.  I met with staff who were responsible for managing packages of care and heard their anecdotal evidence of people who had previously had bad experiences with care providers but who now felt welcome, included and celebrated.  I had long conversations with staff about how inclusive care for the LGBTI+ community was embedded within a faith based organisation.  It was a fascinating and exhausting day.

Further updates on this amazing adventure to come.  Must dash I’ve got a bus to catch 🙂