31. Adult Social Services & the Care Act 2014

A couple of weeks ago I was present when a social worker visited my sister.  Prior to that visit I had contacted Adult Social Services to ask them to support my sister, as she did not receive any support.  During that call I was informed that practical care which my sister needs, such as cutting up food and cleaning,  had been stopped.  Only personal care was being offered.  This jolly looking female arrived and asked questions about my sister’s ability to socialise.  She then suggested a number of changes my sister needed to make to her diet.  Although stated a number of times, this social worker was not hearing of my sister’s lack of dexterity in her hands, hence not being able to cut up food, of her severe fatigue, clinical depression, etc.  She started bleating on about how she had become a vegan which had resulted in her losing weight and feeling healthier. In fact it was as though the Vegan Society had sent one of their members to convert my sister!  Ironically this social worker revealed that she had a daughter who was bed-bound due to having Lupus.  This social worker could not get her daughter to change her diet or take on any of her newfound dietary changes. It wasn’t lost on me that this woman had failed to recognise that her daughter and my sister was disabled due to a degenerative condition.  Veganism was her saviour and therefore as far as she was concerned veganism would be everybody’s saviour!.  She did not complete an assessment form but made a few notes during her two hour visit, trying to convince my sister of the need to change her diet, take supplements and change her mindset.  My sister struggles to remember to take her medication, let alone the supplements that I as a degree qualified Medical Herbalist purchase for her.  It never occurred to me or my sister that this woman was carrying out an assessment under the Care Act 2014!  My sister has cognitive impairment, therefore as someone whose memory and the ability to recall fail her, she should have been given the right to have an advocate present.  This I later discovered from the advocate who called me separate to and after the social workers visit.  I had spent two previous weekends cleaning up the ground floor of my sister’s home, which had succumbed to her hoarding.  Whether it be an inability to cope, provides comfort or is a form of OCD, hoarding is a window into the mind of an individual which tells the world something is wrong.  It was only when the social worker inspected my sister’s bedroom that she acknowledged there was a hoarding issue. She was like Doubting Thomas, she had to see it to believe it.  Telling her there was a problem was not enough!  We heard nothing from her until I contacted her office for a response, only for my sister to receive a pathetic letter informing her that she did not meet the criteria for eligibility under the Care Act 2014.  There was no breakdown of why she did not meet that criteria.

I set about writing back to her on my sister’s behalf.  This is something I have to do most evenings when I come home from work, which I deem fire fighting!  If I leave my sister to sort things out, in most cases without guidance from me, she will sabotage a situation that was fine or accept whatever rubbish others espouse.  This I put down to the brain shrinkage from MS. After a hard day at work looking at a computer screen and trying to sort out other people’s mess, I come home and look at my computer screen, trying to sort out my family’s mess.  I have little time for my mess.

Posted in Autism Spectrum Disorder

30. Emotions in Autism?

I have spent this evening swapping texts with my niece because she feared ranting and becoming emotional if she spoke to me.

Like many teens, my niece wants to have her cake and eat it.  She asked to visit a friend’s house on Sunday and I refused, therefore I was seen as the devil.  The most interesting part was that this young person, who has struggled to express her emotions due to autism, expressed a range of emotions to me.  She expressed anger, frustration, sadness, all the emotions that I have constantly been reading she would not be able to express as an autistic person.  When she started dissecting the family, I saw her as a typical teen who sees the flaws in their family and attacks them because of it.  In adulthood, it is inevitably this family that they turn to when they are having problems with their friends and life.  I also saw it as the breaking of the umbilical cord between home en route to making their way into the outside world.  Even though I did not give birth to her, we have a strong relationship as I have co-parented her for most of her life.

Interestingly, as she does not live with me, she judged me on the negative emotional snippets she had seen me express during moments of frustration with her mother and the authorities, when under pressure or in trying to help her help herself.  She then deduced that summed up the whole me. She eliminated the comedic side of myself and chose to target me at my worst.  I gather that was to hurt my feelings due to the fact that she was feeling like crap.

What is so interesting about being a carer is that the cared for never see the true extent of the carer’s input. However, they claim to appreciate it!. Right now I am nursing a virus which has affected my throat, causing me a lot of pain. In the run up to my virus, I was struggling to manage my time between work and collecting my nephew plus his belongings from university, 400 miles away.  No one sees this! My niece is at an internationally renowned school, her previous school was fantastic. All because of me and the relationships I have worked to create, thereby opening doors for her.  In trying to protect her from class sizes of 35+, being at a school where the Head does not know her name and long term bullying, while ensuring that her autism is taken into account, I have put my life aside!  The first thing these little people do is tell you that they either did not ask you to do so, or that they have heard this since they were at age zero.  It is at this point that I want to relinquish my role as a carer and let them get on with it.

Posted in Autism Spectrum Disorder

29. The School of Hard Knocks

Since giving up my life in the film/tv world, I had taken up what I thought would be temporary/contract employment  – administration.  9 years on I am still struggling to juggle working in the various industries I have found myself in while looking after my family.  In the meantime we have all aged.  I more so than my sister who funnily enough has flawless skin, no wrinkles and not a grey hair in sight.  I in contrast look and feel at lot older than my years and am a regular user of hair dye!  Is that the price one pays for being a carer?

When I started working in this new world of administration, I informed those around me of my plight, but I would not dare do so now, even in my present part-time temporary role.  There is one rule for them and one rule for me.  While those I work with and have worked with disappear at the slightest murmur of ill-health from their loved ones, I am not afforded the same privileges and am expected to be on hand for them regardless. In my previous life everyone was a professional, skilled at the role they did although the mental health of some of them could be called into question.  In the world of the employee, many seem to be sitting around waiting for their pension or frantically improving their financial lot and industry status, with my assistance might I add!  Bullying is rife. In fact I have come to believe that it is part of British culture, as I also encountered it in the film industry.

I do not believe that you can be a carer one minute and an uncaring employee or ruthless self-employed freelancer the next, as the two do not go hand in hand.  Due to the nurturing nature of caring, the managers I have encountered have been both bullies and exploiters. The companies I have worked for are aware of this but choose to turn a blind eye, as the pressure they put on the bully who stays, probably means they would struggle to find another mug who would stay. I do not know if anyone else has experienced this, but the company then anoints the bully/exploiter with awards in order to keep them in the role!

Being good at what I do does not count. In fact it has often gone against me, due to the insecurity of the perpetrator whether manager or co-worker, having acknowledged my competence as a threat.  The only times I encountered bullying in the film industry was while working with one of the few female camerawoman at the time and as a trainee. Bullying encountered in the latter role was considered a rites of passage.

Looking back I miss my past life. I feel trapped by circumstance. With the exception of the nutters in film/tv, those I worked amongst were on my level. However, up until I left it was a young persons game and a man’s world, unless you did hair and make-up, costume or continuity.  Looking at recent tv credits, hopefully that has changed.


Posted in Broadcast media, Carers, Film, TV

28. Work 2 – my hand in the lion’s mouth

In the ten years I have been an employee, (I was self-employed before that) the world of work has worsened, thanks to globalisation.  I was always shocked at how one was not just taking on employment, but in fact selling one’s soul in exchange for money to live on.  In my father’s day, the Human Resources department (HR) was called Personnel.  Now it centres on how the company can take the maximum resource possible from each member of staff. I laugh when at 4pm on a Friday my boss asks me to give him a detailed piece of work before the end of the office day which officially finishes at 5pm but can extend to 7pm.  I laugh too when the attitude is that one must work core office hours, tied to a desk. If you stay behind late and come in early to make up the hours, you are not deemed to be working.  If you are away from your desk for any length of time, you are skiving. I came across a newspaper article this week stating different ways people take time out of work e.g. spending a long time in the toilet. Now I know why the ladies toilets are always occupied!  It makes a joke of agile working, the new method of working where you find an available desk rather than having a set desk to work from or working from home.  It is often difficult to contact those who claim to be working from home by phone, only by email.  Open plan offices are noisy and loud with staff watching what others are doing or not doing.  I have an assistant who is extremely loud and feels the need to tell me everything she is doing, even though she is doing her job. She is like a bull in a china shop!. I have come to realise that this is all part of the drama of working in an office.  You have to be loud and noisy, shouting from the rooftops about what you are doing or are going to do.  There are also those like myself, quietly getting on with their jobs who in reality are probably keeping the place running.

How does someone with autism function in the world of work I have described?  Some do in IT based worlds, where their talents are so much greater than their social skills that the latter is overlooked.  However, I work with people and have been in work situations where not a word is exchanged with anyone all day.  How can that be healthy?

Posted in Autism Spectrum Disorder

27. Biting my tongue

I collected my niece from school yesterday.  Prior to leaving the area for London I had to run around the shops.  Faced with an unfamiliar layout I asked for help to find the items I needed.  Alongside me just behind my ear was this noise, .  ‘You said we were only getting one thing!……..’Why are you asking for pistachios, you said you only wanted a cucumber?’  and so on.  The shop assistant who was trying to assist me gave me a sympathetic look.  I understand that the poor child wanted to get home, however as I informed her, I had to get things for other members of the family.  Life was not just about her. It took us 3 hours to get home, as it was a bank holiday weekend and everyone was going somewhere.

I am an impatient driver and cannot stand traffic jams.  So after driving at a snails pace for the longest while and seeing an equally long queue ahead, I came off the motorway at the next slip road stopping at a petrol station to ask for directions.  It had been hot for the first time in a long time.  In fact the whole weekend was forecast to be hot, so I bought a drink for my niece and what I thought was an ice lolly for myself.  However, it turned out to be ice cream.  As I am trying to avoid dairy I expressed my desire to change it.  My intention was thrown off course by my niece’s nagging and being 1 hour behind the destined time of arrival, I consumed the ice cream.  Amazingly our journey on the alternative route home was traffic free.  When we finally arrived home I had my niece try on a pair of light-weight shoes for school.  I find the hardest thing about my niece is her immediate rejection of anything that has either been bought for her or suggested.  From my perspective one of the difficulties in dealing with someone with high functioning autism is they are adamant they are right. That can be quite draining as there is little room for discussion of opinions.  She rejected the shoes, she rejected some beautiful slippers her mother bought for her, etc.  I managed to bite my tongue throughout this 3 hour ordeal, sorry journey, knowing that if I lost it the poor child would be very hurt and confused, having not foreseen the likely impact of her behaviour.

When she was three and undiagnosed, she was adamant that she would not do ballet classes.  The reason I tried but failed to encourage her to take up ballet, was because it is great for setting a child’s posture.  At six she was adamant that she did not want to go to drama classes.  When I could not locate the drama school, she was elated that I was lost! A hint at her condition was when she finished her first drama class, she asked if she could attend the next one?  I was confused by the change of mind but thought this was just a difficult child with a strong will.  However, unbeknown to us autism was showing itself in the form of anxiety.

Posted in Autism Spectrum Disorder

26. In ‘Fixer’ mode

En route to my mother’s today, I stopped by my sister’s.  After knocking gently a few times and not receiving an answer, I eventually rang the doorbell only for it to be answered by a sleepy nephew.  My sister was out.

While my nephew disappeared back to bed, I took the opportunity to look around my sister’s house in her absence.  Although upset, I was not surprised by what I had long ago suspected. My sister is struggling to cope!.  This presents itself as hoarding.   Upstairs I could not see the floor in her bedroom.  The landing was covered with bags full of items and the kitchen, which I am already familiar with, houses racks of wet newly washed clothes.  One of my sister’s OCD traits is to constantly wash clothes.  The washing machine is always on. There will often be one piece of clothing in the washing machine that has only been worn once.  I took a number of photographs and asked my nephew not to let his mother know that I had been in the house.  I had already sent her a text to say I would be dropping by unaware that she was not in. Now I sent her one saying that I had been informed she was not in and left.  Now I was in fixer mode. Unlike other things that have reared their ugly heads over my lifetime, multiple sclerosis is something that I cannot fix!  However, I can attempt to fix my sister’s uncoordinated care by the medical profession, social services and others who are in control of her life.  As well as only dealing with symptoms, various sections of the medical profession works in silos and laughingly will often ask my cognitively impaired sister what recent appointments she has undergone and the outcomes!

I made my way to a well known London university where I spent half the day at an MS Society seminar updating MS sufferers, relatives and professionals about the latest research and drug treatments.  In the UK there are 100,000 people with MS, which affect three times as many women as it does men. 100 people are diagnosed each week and 75% are unable ever to work again.

Researchers worldwide are looking at how to stop MS via 1) immunomodulation – stopping immune system attacks, 2) neuroprotection – protecting nerve cells and 3) myelin sheath repair – replacing lost myelin.  Combining these three therapies would be the ideal scenario.

Fatigue is the biggest problem that MS sufferers have to deal with and my sister’s biggest problem.  Bladder problems affect 70% of people with MS.  There is no single cause of MS but there are many factors that influence the chance of developing the condition.  For example, if you have grown up in the UK you have a 1 in 330 chance of developing MS.  If you have a parent with MS it is 1 in 76 and 1 in 37 if you have a sibling with MS.  Researchers have also acknowledged that infections such as Epstein Barr virus, which causes glandular fever predominantly during teenage years, is a contributing factor.

I was informed about a number of programmes such as the CRAMMS trial which focussed on cognition, memory, decision making and concentration.  This tests whether group cognition rehabilitation sessions can improve memory and cognition.  MS LEAP looks at the benefits of resistance exercise, which has been shown to improve fatigue.

Developing treatments for energy: 1) Ocrelizumab – is for those with early stage primary progressive MS (PPMS) and relapsing remitting MS (RRMS). 2) Siponimod – for secondary progressive MS (SPMS)

Myelin Repair:  Bexarotene – which has been used as a cancer drug.  Trials are underway on those with RRMS

Neuroprotection: MS SMART Phase 2 trial which could slow progression of the disease

Slowing brain shrinkage: Simvastatin, a well known drug used to reduce high cholesterol. The trial is presently in the recruitment phase.

Stem cell therapy, which involves chemotherapy was also discussed and is only prescribed for people with highly active RRMS.  The MS Society’s criteria for ‘highly active RRMS’ is two relapses during the last year.  There is currently research underway looking at a more moderate chemotherapy centred stem cell therapy

New drug treatments presently undergoing trials are Alemtuzamab to slow disability.

A brief discussion was held on diet, although there is little research here.  Discussion focussed on the Wahls and Paleo diet.  Obesity also increases the risk of developing MS and of faster deterioration.

Following the seminar I made a GP appointment to discuss my sister’s mental state. I had requested that social services reopen her case, which should never have been closed in the first place. Lazy social workers felt that my sister’s answers to questions deemed her capable of looking after herself. They had failed to look around her property where they should have drawn the same conclusions I did.  I also left a message to speak to her neuropsychiatrist, whose treatment stance is to ‘try a different drug until he finds one that works’. In other words – it’s all guess work!  In this age of precision medicine, surely there must be a more scientifically advanced way of matching an anti-depressant to the patient?.  I left the seminar drained but armed with the speakers details, as she had offered to put me in touch with a team that could suggest consultants and MS nurses who offered a more coordinated approach to patients’ treatments.  Fingers crossed!


Posted in Autism Spectrum Disorder

25. End of Financial year pressures

My 90 year old mother receives care in the form of cleaning.  Other than that she does everything else herself.  That’s cooking, bathing and dressing herself, laundry, even changing the beds.

However, the government has squeezed local authorities so much that they are taking the little they give the people at the bottom.  I received a call from a local authority finance worker who I have dealt with before.  She is like the grim reaper!  You can guarantee that she will take away whatever little one might already be receiving in care.  The disgusting thing about governments from time immemorial is that all those of pensionable age can claim a free bus pass. Rich and poor can receive child benefit for children under the age of 16 and the elderly over a certain age can receive a winter fuel payment.  None of this is means tested, meaning that a rich pensioner can claim all of these things. Many do and add it to their investment pots for their children and grandchildren. By the time these grandchildren go to university their fees are paid for by these benefits!  In the meantime the government and local authorities are making cuts from the bottom, taking from people who have little and need more.

Today while I worked from home, a cleaner turned up unannounced from a new care company.  No notice was given informing us that my mother’s previous company was no longer providing care. Is  social services so overwhelmed that they cannot alert the cared for person?  My reason for asking is that without being alerted my mother could be letting anyone in. As we approach the end of the financial year, the local authority is looking to prepare its books for the start of the new financial year in April.  While I always welcome in a new year, I am starting to do so with a sense of dread as the first three months of it are hell.  I pay a tax bill in January and in March I am bombarded with local authority paperwork which includes increases in payments for services which others are managing to wangle for free.  The key seems to be that if you have medical/health needs, it is important to declare them and request as much help as possible.  If you don’t and seem able to manage, the local authority refuses to provide basic care.  In short, things have to be at either extreme of the spectrum – nothing at all is required or all is required.  If you need some help you are unlikely to get any help.

Posted in Autism Spectrum Disorder