A Long Time Coming

I am a terrible blog parent. I am sorry. I have neglected to update this page for quite some time but I intend to change that.

In the time I have been away a huge amount has happened so here’s the short version:

I now have a diagnosis of autism and ADHD. I am working in autism diagnostic services in the NHS and also running voluntary and independent services for neurodivergent children and families across the High Peak, Stockport and Tameside. I am studying for my MSc in Autism and Neurodevelopmental Conditions.

My family journey through autism identification has changed my practice considerably. The challenges we have faced to get our children’s very basic support and rights met has opened my eyes to the issues that SEN families face. Suddenly my family were in a position where if we didn’t become “those” parents, our children would suffer even more. It has been years of exhaustion, trauma, fighting, burnout… probably contributing to why there haven’t been updates to this page! How we have survived, mentally and physically is a constant surprise to me. However, my desire to improve services for neurodivergent families in my local area has been galvanised in a way that I hadn’t predicted and has led to fantastic things.

Raising My Voice

This blog is 10 years old!

I cannot believe Sparkle Occupational Therapy has got to 10. This started as a way of keeping up to date with professional development during my maternity leave and my how this baby has grown!

I have come a huge way privately and professionally. Identifying as professional Marmite comes with the territory of being a neurodivergent occupational therapist unfortunately. I am still banging on about the impact of ableism within our practice and the wider paediatric health, education and social care communities. The alliances I make are strong and the bridges that burn behind me are hopefully beacons to call others to the fight.

I have had the privilege of having my story told via two amazing opportunities recently.

The first of which was a radio interview with the wonderful Marie Baistow on Rossendale Radio’s Well-being Show. Marie is also an occupational therapist so it was easy to assume we knew exactly what each other was talking about when it came to concepts of occupation and well-being, particularly in autism. I did get to pick some songs that were personal to me too which was great fun and really made me think about how music has played a part in the last few (very traumatic) years. You can listen to the show here: https://player.autopod.xyz/360693 https://player.autopod.xyz/360693

The second was an emotional exploration of my journey as a practitioner, parent and neurodivergent person navigating the different worlds and roles of SEND and advocating for my children and our family needs and how this has changed my practice. The incredible and sensitive Autisticly Aar of the Neuro Rainbow Project invited me onto his podcast. Aar is a really interesting person with a journey of their own through diagnosis and therapies. It was very strange having to let go and be the person being interviewed! As an assessing clinician I spend so much time asking questions, I forget that sometimes people want to know about me and that process of opening up can feel raw and vulnerable. Aar was a great interviewer and very sensitive to neurodivergent needs. It felt mightily indulgent to spend so much time discussing my practice and experience but hopefully it has raised the issues that I am passionate about and continue to fight for.

You can listen to the Neuro Rainbow podcast via the link below. Check out the other episodes, there are interviews by people much more exciting than me!

https://embed.acast.com/$/634c77ed00db0d00112fa825/the-holly-sparke-hill-interview

From There to Back Again. A Paediatric OT’s Tale.

This post was started in November 2016

It’s been a while since I posted here. It has been a very busy year professionally speaking. In February 2016 I was offered a post as a senior OT with a private company. I had never thought I would be able to work for a private company, mainly because I believe so passionately in healthcare that is free at the point of access.  However, by the time I had left my last NHS job, frankly I was ready to leave OT entirely. Those wise old birds the Rolling Stones once sang about you not always getting what you want but sometimes you get what you need. That was this job. I was recruited as a band 6 equivalent but it quickly became apparent that it was a team lead role and the entire service needed an overhaul. The team were great but badly needed OT leadership and I had to step up quickly.

The previous manager of the team had great vision and a real passion for business development but hadn’t had much clinical experience and the service needed to become more responsive to the needs of the schools and children that received our services. The junior OTs were keen to make to service more responsive, evidence based and really push best practice. I led the team in using a whole school approach to shape the service, providing training and support to schools that purchased our service. We rewrote the documentation, non standardised assessment tools and report format, as well as offering a more flexible provision for schools that wanted a mixture of groups and individual therapy for their children.

It was so refreshing to be able to make changes wherever they were needed and to see change happen quickly! I wouldn’t say it was all plain sailing though. My previous experience of supervising staff was limited to students and the occasional junior staff member but here I was with 6 junior staff to train and supervise and do formal appraisals! Having had some difficult experiences with my own clinical supervision in the past I felt that I knew what worked and what can be difficult in the supervision process. I went with the basic premise of unconditional positive regard and kindness and that I wanted to be the type of supervisor that no one dreads coming into see. It mostly seemed to worked but I really struggled with delivering difficult news and broaching performance related issues. The experience of supervising and managing a team has helped me grow as a clinician and also understand and cope with accepting things as they are, changing what you can but letting things outside your control go.

I’ve seen a range of patients and learned a lot about customer service in health care. Customer service is not something I’d considered when I worked in the NHS. I always wanted to provide the best service but I hadn’t considered the economic consequences of my interventions. I feel that I have a much clearer concept of the real cost of good quality therapy and as a result the challenge that faces NHS OT departments.

……. Fast forward to November 2017

After the challenges and difficulties of my last NHS post, I never thought I would find myself looking to return but in December 2016 I was offered a position in a community paediatric team much closer to my home and I decided to take it.

Commuting up to 90 minutes a day and the lack of flexible working in my private post meant that realistically it wasn’t sustainable for me, so I made the leap back into the NHS.

It’s been fair to say that most people have been confused by my desire to return to what many have referred to as a “sinking ship” but honestly I know that in my heart I made the right decision. I believe passionately in free at the point of use healthcare and feel that the NHS is an institution worth fighting for.

I work for a wonderful team of supportive and highly skilled OTs, physios and speech and language therapists and it feels good to be back in a truly multidisciplinary team and learn from others on a daily basis. So far the future is looking bright and long may it stay that way!

Time to Breathe

I’ve just got back from the Royal College of Occupational Therapists Specialist Section: Children Young People and Families annual conference 2017.  What a wonderful way to spend two whole days; immersed in the company of your peers, listening to all the fabulous and inspirational projects they have been involved in and want to share.

I gave my little talk on social media and continuing professional development, but if I’m honest, although it felt great to share the great resources I’ve found with other OTs who are social media shy, my heart was not behind the message one hundred percent when I wrote the presentation.  It has been a while since accessing all these social media channels really gave anything back to me. However! After spending those two days, watching other OTs immerse themselves in social media to share what they found interesting, I realised we are making a difference in getting the word out there. It is so much easier to get access to research and studies and clinical practice ideas because of social media and that gave me a huge sense of achievement; that three years ago I presented at a CYPF conference and virtually no one tweeted – but this year there were people actually competing to see who could share the most about the conference!

So I’ve had two whole days away from my clinical practice to take a breath and think about what is really important to me as a practitioner.  I suppose in previous years I’ve attended conference and thought that those other OTs were not like me. They were always much more qualified, more confident, braver, more committed and more natural at working in these incredibly stressful roles; but this year I felt that I was amongst like minded individuals and that we shared some common challenges and beliefs.  I still feel that I am very different to many of my peers and colleagues in practice, and I feel that this can be rather uncomfortable at times, but now I see that it can really be a strength too.

This opportunity to step back and really see the bigger picture will only be fleeting, I understand that. Before I know it I will be dragged back into the rushing river of busy community practice. But right now, at this moment, I can see things the way they really are and the way they need to be. Peace out.

Bathing The Baby

Bathing can be a source of great anxiety for many parents. Babies and toddlers can be tricky to bathe, they are wriggly and slippery, sometimes angry and distressed.  It can be particularly difficult if they cannot sit up on their own but they have outgrown their baby bath.  Some children dislike the water and some want to play with their siblings but struggle due to being unable to sit independently.

I’ve met so many parents recently who need a bit of help to make bath time less hellish. There are literally hundreds of commercially available bathing solutions for babies, toddlers and young children, many of which can be used to help children with minor to moderate physical developmental difficulties.  Not all equipment will be suitable for all children, so if in doubt please ask your child’s occupational therapist.

Tip: Always use a non slip bath mat when bathing your child.

REMEMBER: NEVER LEAVE YOUR CHILD UNATTENDED IN OR NEAR WATER REGARDLESS OF THE DEVICE THEY MAY BE USING.

The Garden Tub/ Trug

Approximately £5

Available from most homeware stores

This is one of my all time favourite child bathing solutions – we came by this after my shower-phobic toddler needed a bath on our camping holiday. Suitable for children with good head control who can sit independently but struggle to sit up in a regular bath tub.  This can be used on a non slip bath mat in a wet room or inside a bath tub. Ensure there are no sharp or rough edges on the trug that your child could hurt themselves on.

Benefits: The child gets to splash and play with toys close by but feels more secure than in a regular bath tub. Available in many different colours.

There is also the Tummy Tub which is a baby bucket bath designed for babies 0-6 months.  This very simple bucket design will set you back around £25 and is available from major nursery retailers and online outlets.

The Swivel Bath Seat/ Non Slip Bath Seat

Approximately £10

Available from shops such as Mothercare, Tesco Direct, Ebay, Online retailers

Suitable for children who have good head control and can sit independently but may need some help to sit in a conventional bath tub.

Benefits: Good for playing with siblings in the bath.

Drawbacks: It can be difficult to get wriggly legs through to sit the toddler/ baby.  Toys can drift away from the child leading to frustration.

The Blooming Baby Bath Seat

Approximately £40

Available from Amazon

Suitable for babies who are not yet sitting up or who struggle coping with the hard texture of bath seats or tubs.  Some parents use this bit of kit to bathe their child in a sink.

Drawbacks: Very expensive! Only suitable for small babies and toddlers

Penguin Type Bath Seats

Approximately £10 – £20

Available from nursery goods suppliers and online retailers

Suitable for babies or very small children with poor head control and who are not able to sit up on their own.

Benefits: The child gets to recline in the water and kick their legs. Can be used in a baby bath or regular bath tub.  Siblings can enjoy being in the bath whilst this equipment is in use.

Drawbacks: Only suitable for small babies.

     

The Laundry Basket

Approximately £5

Widely available

This has appeared on many “parenting hacks” sites recently and although I can see the appeal of toys not floating away I think there might also be some significant drawbacks.  Suitable for children with good head control who can sit independently. ** Ensure there are no sharp edges or that little toes can be caught in the holes **

An alternative to the laundry basket is a bath bath used inside a regular bath tub.

Benefits: Toys are kept close to the child.  The child may feel more secure in the water.

If your child has more significant difficulties with controlling their body, holding their head up or sitting independently they may need a full occupational therapy assessment and specially prescribed equipment. You should always seek professional advice if your child has complex postural needs and you are considering big or costly equipment.

Thanks for reading.

Sparkle OT

When Good OTs go Bad

Working in the NHS comes with a set of marvellous opportunities for learning and developing skills, both clinical and organisational.

Occupational therapy training in the UK tries to arm students with a wide range of not only clinical but organisational skills to help new graduates thrive in the workplace.

Holding a Band 6 case load within a community NHS setting in 2015 requires a resilience and skill set that demands excellent time management, organisation and prioritisation skill. Extremely high level executive functioning skills to formulate treatment plans, develop services, manage best value for money treatments and manage staff are necessary; In addition to gold standard clinical skills and professional reasoning are required to function day to day in the workplace and that is not taking into account the academic skills required to maintain up to date evidence based practice and registration requirements.

I’m sure there are things that I have missed out and that is the problem.

Academically speaking I am quite successful. I have two undergraduate degrees and got a first class honours in my occupational therapy degree and recently got a distinction level mark in a masters module. I have worked as an academic lecturer and held an occupational therapy post for the last seven years.  I have good feedback from my patients and clinical work and love the development of a therapeutic relationship in complex cases.

My difficulties lie in my severe dyslexia.  Dyslexia is a specific learning difficulty that is threatening to ruin my career and my love of occupational therapy.

I am a strategic thinker and excellent problem solver. I can develop caring, nurturing and motivational relationships with my patients and their families, find solutions to some of their very complex problems and help them through very difficult situations. When it comes to taking that work back to the office and the myriad of paperwork and bureaucracy that surrounds every patient contact within the NHS my brain falls to pieces.  Paperwork remains paperwork within our underfunded service. Technology is basic and unavailable to most clinicians except to record statistics.

The NHS in 2015 has a strong audit culture. Audit culture runs through the organisation from top to bottom with every auditable action having penalties for failure to comply. Audit is most dyslexics’ nightmare. Every filing error, every illegible entry within case notes, every t crossed and i dotted when your cognitive system refuses to acknowledge that t’s should be crosses and i’s should be dotted.

That is not to say that audit is not necessary because it most definitely does, standards need to be met to ensure patient safety and service quality. Audit held like a guillotine over the head of a dyslexic individual however, is not productive and motivational, it makes the situation worse and can actually be a form of intimidation and bullying.

The Disability Discrimination Act (1995) demands reasonable adjustments to be taken to accommodate disability in the workplace, and dyslexia is considered a disability. Line managers will often support an individual with their time management and note writing to the best of their ability and a service called Access to Work provides assessment to see if there are recommendations they can make in the workplace.

It all sounds great right?

In context these strategies might not be so easy to implement. The manager who is assisting you may be snowed under with their own workload. The help you have been prescribed is useful but it doesn’t increase processing speed within the workplace and their is a back load of work to be completed. The IT support you have been recommended may not function on the archaic devices you have in your place of work and up to a certain amount employers have to pay for aids from their own budget.  This is a lot of extra work for smaller teams and can lead to feelings of inadequacy and guilt from the disabled individual and resentment and tension from managers and team members.

Dyslexia is an invisible disability that is easy to misinterpret as incompetence or laziness even in the eyes of the person with the condition. They will have often been told to “work smarter AND harder”, prioritise more effectively, plan their time more effectively and write everything down; however often employing these strategies can be more challenging than the workload itself.  Imagine the exhaustion of a day concentrating hard on numerous tasks only to then realise the actual work hasn’t even started.  Dyslexic people often experience this every day of their working lives.  In addition, dyslexic people may often come with considerable “baggage” regarding their condition. Diagnosis later in life, after a childhood of being told you are “thick and stupid” can have damaging effects on a person’s sense of self worth and self efficacy.

I don’t have an answer to these problems. What I know as an occupational therapist is that OT’s are supposed to be positive about the potential of people with disabilities. If an OT who had no sight worked within our service we would not expect them to pick up a regular printed document and read it, we would not expect an individual who had limited mobility to sprint across the hospital.  We would work hard to ensure an employee with a visible disability had all the assistance they needed to ensure their core OT skills could be put to the best possible use.  The same needs to apply to specific learning difficulties.

Ableist culture exists with the NHS, even though we are probably one of the best placed employers to help tackle it. We are an able-centric culture because our culture is (hopefully) to care and carer workers are “not allowed” to be ill.  We give it our all, for the good of the patients and the good of our service or we are vilified.

The experience I have had as a disabled employee in the NHS has only become problematic when it has become problematic for my service. I am currently in the process of my second Access to Work assessment to address my needs in the workplace but as I have written above their are some considerable barriers to the success of technologies in the current setting. I am still positive that I have a lot to give my service and that my clinical skills are worth fighting this disability for.

Top Down, Bottom Up.

I follow a lot of different paediatric therapy pages on Facebook. They are often fantastic, informative, creative and interesting. Most are U.S. based.

I am struggling slightly with professional identity at the moment. My current specialism is in the physical strand of our community paeds service. I see children with brain injuries, cerebral palsy, developmental delay, congenital problems, upper limb musculoskeletal difficulties and post acute injury. My approach is function focused and I tend to see myself as a professional problem solver. Families come to my clinic generally after being referred by their paediatrician, general practitioner or school for specific solutions to specific problems. Children who cannot access the school curriculum because of their physical difficulty will receive assessment and appropriate equipment. The child with difficulties with self care will receive a graded dressing programme. The child with an upper limb difficulty will receive a splint if appropriate. The child with a brain injury will receive a community based rehabilitation package which involves supporting their family and school to implement strategies to continue their rehab. The approach comes from a risk reduction perspective. The children at the most risk of deformity, exclusion from school, or harm will be prioritised and their problem will hopefully be solved or managed as quickly as possible.

I certainly feel that I take a holistic approach and am taking an occupational approach.  The difficulty I feel is I may be a bit out on my own out here. My international paediatric colleagues are very sensory focused and foundation skills based. Visual perception, executive planning, sensory processing, modulation, these are problems have hours of therapy given to them. IEPs are written to address these difficulties and provide resources to treat these problems.

Sometimes I feel that the children I treat get a bit of a raw deal. The children with severe physical and learning disabilities do not seem to get the hours of therapy their international peers with sensory difficulties get and I worry that due to the neurological and physiological nature of their disability they may be getting swamped in a sea of medical interventions with the basics of movement, interaction, communication, occupation and co-occupation being overlooked. These children who are trapped in the equipment we prescribe them are almost invisible. They are completely dependent upon their carers, they may not be able to communicate their needs easily and they may not be the child that is a risk to others or themselves.

As an occupational therapist I want to find a way of helping. I see potential in occupational therapists being much more actively involved in British state special schools and early years provision and not just the superbly funded specialist ASD schools and colleges.  Working with teachers and parents to help include their child with severe physical and learning difficulties to be included in the curriculum in real terms.  This extends to early years children with developmental delays.  The reduction in local authority run childcare has created a pretty worrying situation for children with difficulties in my opinion. Some private nurseries have fabulous, dedicated staff who will implement strategies provided by therapists and go that extra mile that children with special needs require to fully integrate and make the most of their time at nursery. Other private nurseries provide the minimum that is required of them and struggle with inexperienced staff and high staff turn-overs. The difference for some of the children that attend these sessions can be very apparent. Children who attend an early years setting and have good attendance at school have been linked to better health and well being outcomes and make more successful adults (reference to follow).

The difficulty comes down to who pays for the “extra” service that makes a basic, safe early years and special needs education provision become a gold standard provision for some of our most vulnerable and invisible children. Schools don’t want to pay out. National Health Service occupational therapy services are stretched too thinly to provide this kind of service within education. The children are caught between getting a service that keeps them safe but that could serve them so much better. The new health and education legislation that was introduced in September 2014, certainly provides a new perspective for addressing these issues but they have yet to be implemented in real terms in the locality I work within.

I haven’t got any answers to this difficult problem and I am certainly not laying the blame on the NHS, education or the charitable special schools. I would consider a not for profit team of occupational therapists focused on education and early years inclusion, occupation, health and well being but as always money is the problem and I am a clinician, not a business person.

Peace out OT buddies,

Holly.

 

We’re on the Cbeebies website!

Last year a friend of mine said that Cbeebies were looking for a children’s OT to give them some top tips on promoting independence and daily living skills in toddlers and preschoolers.  Tentatively I said that I would be interested so my toddler and I were invited to Media City in Salford to be interviewed and have a play. I was extremely nervous and kept messing it up but Wilbur was a superstar.  He showed off his wonderful skills, posting objects and using cutlery, and made us all very proud.

The Media City BBC building was very cool and Wilbur took great delight in dragging the researcher all around other people’s work stations.

Here is our Cbeebies debut.  You can find out more about the Cbeebies advice for grown-ups here.

4 Things Your New Baby Needs – OT Style

Babies seem like quite complicated little creatures don’t they?

There are a lot of gadgets, gizmos and bits of equipment out there designed to help babies become little genius’ and make your life easier.

The chances are though that you probably won’t use most of them and they can cost a lot of money.

As as a children’s occupational therapist and a mum of two I’m coming at this from two perspectives – developmental and making my life a bit easier.

Babies, especially newborns are actually quite simple.  They have come out of a warm womb but contrary to popular belief is probably not the peaceful haven we are led to believe.  It is noisy, both internally and externally, constantly moving, swaying, jiggling and getting tighter all the time.  The foetus is unlikely to feel hunger, extremes of temperature or experience digestive discomfort; although these are all very strong drivers of distress in the newborn.   It is generally agreed that other than the basic care needs such as feeding, nappy changing, checking for illness etc, it is repetitive rhythmic movements, deep pressure and “white” noise brings the newborn baby comfort (NHS Choices 2013) .  From an OT point of view the deep pressure and rhythmic movements help the baby organise sensory input (Ayres et al 2005) which gives them a great foundation for the rest of their development. All the theory is very interesting but how do you actually put it into practice to make your life easier and start your baby on the right track?

These are my top four bits of kit that I would recommend to any new parents.

1) Swaddling

Newborn babies usually love to be swaddled.  It helps dampen the startle reflex and gives them deep proprioceptive (information from their joints and muscles) input which is very soothing.  Swaddling is a technique to try with only the very young baby (up to about 6 weeks) without any health problems.

2) Your birthing ball

Birthing balls are great for sitting on and gently bouncing with your new baby.  Babies love the rhythmic and repetitive movement and will often drop off to sleep.

3) An anatomical bathseat

Bathing tiny babies can be rather tricky.  They are very slippery when wet and as part of the theme you have probably noticed, they like the sensory input of having clothes on.  Getting them undressed generally makes them very cross and the knock on effect can be a very stressful bath time.  An anatomical shaped bath seat can help by increasing proprioceptive input and providing a stable base of support that doesn’t wobble when the baby kicks it’s legs.

4) A close fitting baby carrier/ sling

A baby wrap is basically a massive piece of thick t-shirt type material that you tie in a a way that you can “wear” your baby.  The baby is close to the body, tight in the wrap.  New babies should always be placed tummy to your tummy in the sling and as an OT I would recommend they are always placed facing your body until they are old enough to be carried in the wrap or sling on your back (like a piggyback  ).  This provides a comforting position for the baby with deep proprioceptive input, vestibular input from the rhythmic movement of the carer walking and should be able to turn it’s head away from any visual stimulus.  It also works with the natural anatomical position of the baby and can help prevent plagiocephaly (flat head).  For the parent/ carer the baby carrier provides an opportunity to have their hands free to do activities that can be difficult to do when pushing a pram or holding the baby in arms.

Obviously, there are a million other bits and bobs that you may find just as invaluable, please feel free to leave me a comment and let me know what they are.

Love

Sparkle Occupational Therapy x

A Day In The Life Of…

Today’s post comes from someone I admire greatly and who had a huge impact on me when I was training.  Sarah Bodell is a senior lecturer in occupational therapy at the University of Salford, UK.

Sarah is a leading force in using social media and the internet for building CPD and the profile of occupational therapy.  She currently has an app, Occubuzz, which she has developed with colleagues at the university and is well worth a peak!

A day in the life of Sarah:

• Alarm goes of at about half six. Check emails on trusty iPhones. Delete any spam that has arrived since last check at about 11pm last night. Flag any important ones. Respond to any quick ones in an attempt to keep inbox looking nice and manageable.
• Wake up children, Be in awe at child number one’s ability to get up, dressed and out of the house in record time. Despair at child number twos inability to do the same. Prepare for battle.
• Check emails again. Check Blackboard, ( our virtual learning environment) respond to any simple enquiries for students undertaking a research module. Post a useful link and send an email to tell them it’s there. Wonder how many will read it?
• Have breakfast.
• Log in to Facebook and moderate work related pages and discussions and then spend too much time following irrelevant but highly interesting links, watch a couple of videos and catch up with friends.

• Leave house for work
• Check email at traffic lights.
• Begin work phone calls en route, to make time for a coffee on arrival. Salivate at the thought of coffee.
• Coffee, usually with a colleague. A social catch up inevitably ends in work related discussions and items to put on the to do list. Often a gem of an idea emerges such as Occubuzz or developing an online MSc or running a volunteering project with students and I an reminded of how wonderful and creative my job and my colleagues can be.
• Arrive in the office, probably about 10ish. Check email, blackboard and Facebook again then settle down to reread documentation relating to a fitness for practice hearing for a student in another part of the University. The panel begins at 10.30 and I represent our School at it.
• Meeting over, guess what? Yep. Email, blackboard, facebook……..
• Lunch time. Hurray. Down to the canteen to purchase a sandwich and accosted three separate times by anxious students, all of whom begin with “I know you are having your lunch but can I just ask….” It’s assessment time you see.
• 1pm. Teaching. I like teaching. I like students. The session goes well and I am left with the task of adding more resources to blackboard to support our discussions today in class. Wonder again who will read them?
• Check emails, blackboard, facebook…..
• Meet a student for a resit tutorial. We work through the original script together explaining and clarifying issues of concern and planning a suitable way forward. I think the student leaves feeling better than when they arrived and I am hopeful they will retrieve the work and continue their studies.
• Finish off in the office, return any phone calls and leave for home.
• Check emails at traffic lights.
• Arrive home, collect children, make dinner and prepare for the last meeting of the day which is an online tutorial with one of our lovely Masters students.
• 11pm. Check emails. Bed. And so it goes!

 

If you would like to share a day in your life and are an occupational therapist, OT student or someone affected by occupational dysfunction and disability then I would like to hear from you! Please contact me via email at sparkleOT@outlook.com or comment below or on my Facebook page