Southampton Boat Show Raises Funds

Gareth receives the cheque

Gareth receives the cheque

We would like to say a big thank you to Weymouth Marina who chose to raise money for Cerebra at their annual berth holder party.

They raised a fantastic £880 in total and we sent our Corporate Development Officer Gareth Owens to pick up the cheque during the Southampton Boat Show.

If you would like to find out about how you can raise funds for Cerebra, please check out our fundraising pages.

Rotary Ladies Hold Fashion Show

Cerebra's Annaleigh Williams picks up the cheque of proceeds from the fashion show from Edith Davison

Cerebra’s Annaleigh Williams picks up the cheque of proceeds from the fashion show from Edith Davison

Cerebra are very grateful to the ladies at the Heckmondwike Inner Wheel club who have done a fantastic job of raising funds for us over the past year.

Cerebra were the club’s chosen charity for last year, having been selected by the club’s District 4 Chairman Edith Davison. The ladies did extremely well with their fundraising and this year’s Chairman, Jean Skidmore decided to continue to support Cerebra with a fashion show. This took place in September.

Along with the funds raised through the fashion show, the group have managed to bring their total up to an incredible £4,000!

We would like to thank all the ladies at the club who helped reach this fantastic total and also Jacqui Lawrence from Heckmondwike Inner Wheel, who helped to organise the Fashion Show at Healds Hall Hotel, Liversedge, West Yorkshire.

If you would like to find out about how you can help to raise funds for Cerebra, check out our fundraising pages.

Jaiden gets around on his new trike

Jaiden enjoying his brand new trike

Jaiden enjoying his brand new trike

Thirteen year-old Jaiden O’Rourke has been enjoying getting around on his new trike which was part funded by a Cerebra grant.

Jaiden has autism and epilepsy and normally walks quite slowly, leaning on mum Janine a lot. Having the new trike means that Jaiden can now cycle further than he could before and the freedom and independence that the trike gives him has been invaluable.

Mum Janine told us: “The trike has been absolutely brilliant for Jaiden. He loves riding it and can already manage to cycle about four times further than he would be able to walk, which is really nice for him. He’s had lots of admiring comments about it and has learnt to do a couple of tricks on it as well, so it’s incredibly versatile and he’s really enjoying it. It’s lovely for me to be able to walk at a decent pace as well.

Usually Jaiden walks fairly slowly and leans on my arm so I tend to have to walk quite slowly. When he whizzes off on the bike it means that I can enjoy a decent walk, and I even had a go at running a couple of times, something I haven’t been able to do for about ten years now. So it’s been a really big benefit to both of us in that respect.

The team at KMX Karts in Fareham were amazing. They helped us decide which size and type of trike to go for in the first place and organised a test drive for Jaiden so we could be sure he could manage it. When the time came to collect the trike they took us through the various features and showed Jaiden how everything worked and they’ve put some pictures of him on their Facebook page which he thought was brilliant! It’s really been a lovely experience and he’s been so happy being out on it which, of course, has made me very happy!”

You can find out more about Cerebra grants, including how you can apply for one on our grants pages.

Safety gate success for the Innovation Centre

Cole in the car with his safety gate

Cole in the car with his safety gate

The Cerebra Innovation Centre were recently contacted by Nicola, the mother of four year-old Cole.

Young Cole  suffers from Tuberous Sclerosis – a rare genetic condition that can cause benign tumours to grow all over his body, as well as Epilepsy and Autism. He also has behaviour and communication difficulties.

Cole has a baby sister, 9 month old Myla whom he loves her dearly, but his sensory issues mean that he likes to hear her cry, often meaning that he can get overly excited and lashes out at her.

Mum Nicola told us: “This is bad enough in the house as Myla can at least be kept out of Cole’s way but in the car, even with a harness, he still managed to get to her. I would only take the kids out together to places that were close by  and where I could distract Cole with food. Even then driving was stressful and I often had to pull over to stop him getting to her. It was dangerous because I was constantly worrying about what he was doing and so didn’t have full concentration on the road.”

After trying various different solutions from harnesses to dog guards with little success, Nicola contacted the Cerebra Innovation Centre to see if the team could develop a new solution to keep everyone safe whilst out and about in the car. The team came up with the safety gate.

“The Safety Gate is fantastic! It looks great and even looks like it is part of the car. It has a window and little holes so Myla and Cole can still see each other. Cole loves it – I think it makes him feel secure as he likes small spaces but the best thing is that I can drive without worrying because I know my daughter is safe. We can now go further afield in the car together and it has made everyday life so much easier. I can’t thank the Innovation Centre team enough. It has changed our lives.”

The Cerebra Innovation Centre are always eager to hear from parents with their ideas for new products and that’s where you come in! If you have an idea for a product that you can’t find anywhere else or need a product adapted to meet your child’s needs, then get in touch! You can contact the team at cic@cerebra.org.uk or 01792 483688.

Surfing Success for Cerebra

Kai getting ready to surf

Kai getting ready to surf

Our Innovation Centre have successfully tested two pioneering new surfing products for disabled children at Llangennith beach in west Wales. Over the summer our designers have developed two products: a tandem surf board with a supportive “bucket” seat that can be used by disabled children whilst being controlled by a trained surf instructor and a Surf Access Vehicle. Both products are for use by children with neurological conditions and have been developed with Surfability UK (surfing for disabled children) and Tonic Surf Therapy (based on the evidence of the effectiveness of surf/ocean therapy programmes in the UK and USA). The team tested the new products at Llangennith beach and they were helped by thirteen-year old surf enthusiast Kai Lewis, from Port Talbot, who has cerebral palsy following a stroke at the age of one.

Kai taking to the waves

Kai riding the waves

Proud mum Leanne Lewis watched on, thrilled as her extreme-sports-loving son enjoyed the new technology. She said “with this now, he is like the king of the sea, he can sit back, relax, and ride the wave. The first wave he caught was the biggest he has ever caught, and my heart was in my mouth. It was amazing and it opens up so many options, not just for Kai, but for other children with disabilities. Hopefully it’s going to get more children out of their wheelchairs, and for a parent of a child in a wheelchair the more you can get them out, the better.” Speaking after the testing Dr Ross Head, CIC Product Design Manager, said: “The day went so well. We could not have hoped for better surf conditions, weather, and great team of people with the desire to make this work. It was an amazing feeling to see Kai surf past shouting with joy.”

The Surf Access Vehicle

The Surf Access Vehicle

He continued: “Recent news coverage has detailed professional level surfing and brought it to an international audience. The sport continues to grow at a very fast pace. Many disabled surf charities are in existence around the world but they are all trying to use regular surfing and other beach access equipment to enable disabled children and adults to surf. “Since its inception CIC has made a tremendous difference to the lives of many children with neurological conditions across the UK. The unique strategic vision for CIC means that we are able to respond to individual requests for help and can make small numbers of bespoke products that focus heavily on individual requirements and inclusion into society. Some of the products in the portfolio are now being commercialised in partnership with third-party manufacturers under licensing agreements.”

Kai using the Surf Access Vehicle

Kai using the Surf Access Vehicle

Read more here about how CIC may be able to help your family. We are grateful to the University of Wales Trinity St David, Surfability UK, Roger Cooper Surfboards, Surf Tonic Therapy and Walking on Water Surf School for working with us on this project.

All photographs used with kind permission of Mark Griffiths.

Ross and the team at the Cerebra Innovation Centre are still in the early stages of trying to make these products available to surf clubs across the country and you can help make that a reality! You can donate below, by calling our fundraising department on 01267 244221 or to donate by text, just text SURF15 and the amount you would like to give to 70070. Thank you for any support you are able to give.

I would NOT like to gift aid my donation

I would like to gift aid my donation

Decisions about risk

Risks Ahead sign - Making decisions about risksAny parent makes decisions about protecting children from potential adversity, and equipping them to deal with risk themselves. Additional needs demand specific understanding (Goleniowska H. [n.d.]). The type of risk often discussed concerns medical intervention for a child with sickness or disability, but the range is much wider than this.

Often there is one risk perception to balance against another.  For example, movement sensors can detect when a child is having a seizure in the night; but some people distrust them, in case they do not always trigger.

Needless to say, there are academic studies of risk and they are worth a look for any practical insights on offer.

Decision aids

If a dilemma is particularly key and involves a lot of possibilities and evidence, a decision support tool could help.

Many decisions involve doing some research into possibilities.  For instance, choosing a preferred school might involve practicalities like travelling time and routes and visiting schools and finding out what would suit the child from prospectuses, inspection reports, friends etc. (cf. Government of Northern Ireland 2015).  Sometimes an element of risk comes into that, e.g. if there are other children going to a secondary school who have bullied a child in primary.  A more formal decision aid may not be needed if after doing these things, the choices are already clear.

Below, three examples showing how formal aids can be used:

  1. DUETS is an aid designed for patients, carers and others, where uncertainties about the effects of treatments are collected and published (National Institute of Health and Care Excellence 2015).  It is at an early stage but potentially it will help to open the door to understanding risks connected with approaches to neurological and other conditions.
  2. An example on stroke risk (Tidy C. 2015) uses a table-based aid to compare two or more possible decisions.  The first column asks questions, and the following columns contain possible answers, using evidence-based research and experience.  Making out such a table for your own dilemma might clarify things for you and for others involved, and might simplify things by enabling some of the possibilities to be eliminated.
  3. ATN/AIR-P (Autism Speaks 215) is a downloadable set of decision tools aiming to aid families who are unsure about using medication for challenging behaviour.  The set once again includes a table approach to weigh up risks and benefits, where the authors have done the research to set out the evidence.

Formal risk assessors in businesses etc. assign numbers / scores to find out whether a risk is worth taking and what resources are needed to mitigate it. (“The quantity of risk is equal to the sum of the probabilities of a risky outcome (or various outcomes) multiplied by the anticipated loss as a result of the outcome.” Boundless 2015).  Maybe this approach is over the top for everyday decisions such as whether and when to allow an impulsive child to cross the road on their own, but it could be worth looking at for issues that have not been clarified in less formal ways.

Sorting out misleading information

For information about statutory processes or how to find good sources of information, please see our Parent Guides: Decision making and Finding and appraising information.

It is worth adding that there is an art to applying the evidence that others have gathered and the conclusions they have drawn from it, even if they are good sources, particularly if statistics are involved. Statistics often form a part of the evidence but they can be misleading because they can present the same facts in markedly different ways.  The charity Sense About Science publishes a number of laymen’s guides including Making sense of statistics (Sense About Science 2010). Others in the same series cover topics that parents might be anxious about, such as medical tests.  The further advice in the Cerebra Guides about appraising information is needed even for good sources.

Anyone working out risk accurately needs to start with the correct basic information about the situation, otherwise the logic built upon that may not be correct. Again, even good sources can fall into this. Some interesting examples of misleading uses of evidence and statistics illustrate the things to look out for (Spiegelhalter D. 2008-2015).

Children’s decision-making

Children's decision makingThere is another art in supporting a child to make decisions about risk and to work with adults on this, especially where there are cognitive and emotional elements to their condition. It is accepted as a right for children, as well as for older people with disabilities who may still need extra support in making decisions, sometimes referred to as “the dignity of risk” and recognised by the United Nations (UNHCR 1996-2015).

This right involves being able to consider and take risks and not to be automatically prevented from doing that by the perceptions of others. Having said this, some children will not yet be equipped for making every kind of decision in terms of what they can understand and deal with.

Advice for assessing and managing risks in a proportionate way (Victoria Dept of Human Services 2012) includes providing information about options; thinking together about ways to manage any real or perceived risks, and what might happen; helping to understand if a desired risk cannot be taken; and agreeing to disagree with a parent, or someone else who has a duty of care in a situation. It is pointed out that some decisions might involve risk not so much to them as to someone else.

The authors of a book about helping children to take good risks (Eppler-Wolff N. and Davis S. 2009, see pp.122-128, below) identify steps that parents can take. They also take into account effects of neurological and temperamental differences, and explain why it is important to a child’s development that they are enabled to take risks.

Central to the understanding of risk is the concept of probability, i.e. that something may or may not happen and how to take that into account. In the National Curriculum, it is considered that children can learn the general concept at about ages 5 upwards (University of Cumbria 2006).

Bradberry T. 2015 offers some tips on good decision-making from the business world that would apply to parents as well as children, including:  turning small decisions into routines so that they take less effort; taking advantage of your brain’s clearest time of day; recognise emotions and choose a good time from that point of view as well; and make the process easier by using a pre-determined set of questions.

Bonuses

One advantage of making a reasoned decision, and knowing how you have got there, is that when you have to argue a case with someone else you will have the arguments at your fingertips.  For example, it is easier for a cash-strapped service provider to justify giving a service to someone who is presenting clear evidence of their need for it.

Another advantage is that it helps you to use consistent strategies for recurring risks, an approach which, if the child can perceive them, should make things more understandable to them.

Thirdly, thinking in advance about risks that are currently not an issue but are more likely to come up with a child’s particular disability and characteristics, should mean that decisions can be made quickly when they arise.  At a meeting in a public venue or at an organised coach trip, for example, someone will stand up and tell everyone where the exits are and what to do in an emergency.  However, what if it would be more difficult for your child to use that exit or if it would take them more time to get there?

Recently a colleague who travels with her son advised, about pre-positioning and pre-booking with certain airlines, to let the company know beforehand of all additional needs that a child has; to request extra baggage allowance for equipment if needed; to pre-book seats and child meals; and at the airport, to go to the Special Assistance desk for help with access, including an aisle chair if needed, to be first on and last off aircraft, or anything else like that; and to get a letter from the GP to help with travel/customs/border security especially if carrying any medication.  What a difference this kind of planning can make.

References

Ffos Las Family Fun Day an Unbridled Success

Cerebra's fundraisers at Ffos Las

Cerebra’s fundraisers at Ffos Las

Saturday 17th October marked Carmarthenshire racecourse Ffos Las’ annual family fun day. This year, they decided to hold the event in aid of Cerebra.

There was plenty going on to keep everyone entertained including bouncy castles and inflatable sumo suits for the children (or big kids!).

As well as the races that were being held throughout the day, there was also a special tent set up with big screens for rugby fans to enjoy the Wales v Australia game.

Even though the home team crashed out of the Rugby World Cup, it didn’t do anything to dampen anyone’s spirits.

As well as receiving £2 from the entry fee of everyone who went through the gate, Cerebra also held their own raffle on the day with some fabulous prizes including a family ticket to Oakwood theme park and a Pandora bracelet.

The final total amount raised is yet to be confirmed but the raffle raised over £1,500 and Cerebra would like to say a huge thank you to Ffos Las for holding the event, and to the public for their incredible generosity.

St John’s Chambers support Cerebra

Delegates at the St John's Chambers Conference

Delegates at the St John’s Chambers Conference

On Tuesday 13th October, St John’s Chambers in Bristol held their National Conference, raising money and awareness for Cerebra.

St John’s Chambers is one of the largest barristers’ sets in the South West, with over 80 members including seven silks, specialising in all major areas of law. The conference featured speakers who are leading consultants in child brain injury and covered many hot topics relevant to practitioners working in the field of child brain injury. The programme of events can be viewed here.

Chris Jones, Cerebra’s Chief Executive, addressed the conference to outline the work that the charity does and delegates also had a chance to view a selection of items designed by the Cerebra Innovation Centre (CIC) including the ever popular iPad Case and the GoTo seat.

Cerebra is very grateful to St John’s Chambers for their support and for helping to raise the charity’s profile in this way.

 

 

Resources – October 2015

ResourcesOur monthly roundup of useful resources for parents of children and young people with neurological conditions.

The Parent Zone
Information for parents about keeping children safe online, talking to children about mental health issues, the meaning of various teenage slang words, and other subjects, (The Parent Zone with the National Crime Agency).

Imagido
Recently-founded company selling a range of educational / young play toys.

Same But Different
A Community Interest Company aiming to raise awareness of disability through arts.

InsureandGo
A further insurance company that parents have found useful for covering travel with children who have pre-existing conditions.  Some others are already listed in our article on travel insurers covering children with disabilities.

Universal Credit and Other Benefits
Guide linking to information on extra support available to people who receive Universal Credit, including help with healthcare costs, free school meals, legal aid and court fees and disability and pregnancy grants and payments, (Dept for Work and Pensions).

Details of the changes to school- and college- age qualifications in England
These relate to a series of summary “postcards” that are being sent round schools (Ofqual).

Health and social care resources

Patient Engagement Hub
A showcase of resources explaining the range of services available from pharmacists / chemists’ shops, (Royal Pharmaceutical Society).

Video about Personal Health Budgets
A solicitor runs through the essentials in about 20 minutes, (Autism Connect).

Care Act 2014
An explanation of the Care Act 2014 which came into force in April this year, (Irwin Mitchell solicitors).

Immunisation
The routine immunisation schedule from Summer 2015,  and Vaccination of individuals with incomplete or uncertain immunisation status, from September 2015, (Public Health England).

NHS Rights in Health Care
A poster for under-18s about confidentiality, making their own decisions in healthcare and making complaints in their own right, (NHS England Youth Forum).

Making a complaint about health and social care services
Information to help you make a complaint in the UK and Channel Islands, (Headway).

Resources for specific conditions

New version of the Transition Toolkit for families of children with autism
Updated, plus new sections including independence skills, safety, digital literacy and other topics to help them move from adolescence to adulthood, (Autism Speaks).  Please note that while the general advice applies anywhere, the references to public service systems and legal matters only relate to the USA.

Cancer and school life
Resources to help teachers and others to support children with cancer, (CLIC Sargent). Also, check out our guide, Returning to School: A teachers guide for pupils with brain tumours, during and after treatment.

Acquired brain injury in children: a parents’ guide
Free 200-page practical guide covering all stages of a child’s journey through treatment, rehabilitation and transition to adulthood (Children’s Trust).

Dealing with a Brain Injury
Suggestions for understanding and dealing with a changed young person and changed family dynamics after an adolescent has had a brain injury, (Caron Gan, Bloorview Research Institute, Canada).

Concussion Consortium
A new website that includes advice about the type of traumatic brain injury that can occur in sports activities, (Kern County, USA).

Everyday triumphs: small steps to a healthier heart for mental health service users [aged 14 and over]
This resource is based on statistics indicating that people with severe mental health conditions are at a higher risk of developing heart disease (British Heart Foundation).

Epilepsy films and booklets
A collection designed for people with epilepsy and learning disabilities, (Nottinghamshire Healthcare).

Event

First annual Challenge Poverty lecture
Glasgow, 22 October 2015
A lecture given by Naomi Eisenstadt, the Scottish Government’s new Independent Advisor on Poverty and Inequality, about what can be done in Scotland.  Free but must be booked in advance, (Poverty Alliance and Centre for Contemporary Arts).

News – October 2015

Our monthly roundup of news and legislation relevant to families who have children with neurological conditions.

Summer-born children ‘to get the right to start school later’A stack of newspapers
The Schools Minister, Nick Gibb has written to schools urging them to allow summer-born children (i.e. born after March 31) to start in reception class at age 5 if parents wish, and to stay with the same age-group as this as they move through the school, (England, Dept for Education).  This comes ahead of proposed legislation to the same effect.

NHS Atlas of Variation in Healthcare
The 2015 NHS Atlas of Variation in Healthcare has been published for all the regions of England.  Analysis by local authority area, clinical network or clinical commissioning group (Public Health England).  Also includes a small section on education.

Embracing Progress, online photography competition on a theme of disability
Categories are: Ambition; Independence; People; and Work / Education.  Entry classes are:  age 17 and under; and age 18 and over.  Closing date:  22 November 2015, (Irwin Mitchell Solicitors).

Disability Research Centre
A new Disability Research Centre is to be launched at Goldsmith’s College, London, on 12 November 2015.  It is free to attend the launch but pre-registration is required.

Legislation

The Mental Health Tribunal for Scotland (Practice and Procedure) (No. 2) Amendment Rules 2015 (2015 No. 334)
From 16 November 2015, changes to the rules for appealing against involuntary detention for mental health reasons in hospitals, including non-state hospitals.

The National Health Service (Payments and Remission of Charges) (Miscellaneous Amendments) (Scotland) Regulations 2015 (2015 No. 333)
From 1 November 2015,changes to the eligibility criteria for help with costs of travel to hospitals and optical charges.

2015 No. 329 (C. 28), The Pensions (2015 Act) (Commencement No. 2) Order (Northern Ireland) 2015
Regulations covering the application of new State Pension rules to Northern Ireland.  Some changes are already in force, others are planned to be by 6 April 2016.  They include a facility to top up the pension by paying Class 3A contributions, which may apply to some carers.  Please see also the note on 2015 No. 1670 (C. 95) for other parts of the UK, reported last month.

2015 No. 1687 (W. 219) (C. 98), The Qualifications Wales Act 2015 (Commencement No. 2 and Transitional and Saving Provisions) Order 2015
From 21 September 2015, completes the installation of Qualifications Wales as the regulator for general and vocational qualifications.  More details about changes to the Welsh Baccalaureate, GCSEs, AS and A level qualifications, vocational qualifications and essential skills qualifications:  http://qualificationswales.org/.

2015 No. 333 (C. 29) The Disability Discrimination Act 1995 (Commencement No. 11) Order (Northern Ireland) 2015
Paves the way for regulations about disability access to taxis, including while remaining in a wheelchair.