Category Archives: Information and Advice

Summer reading

Summer reading

Are you looking for ways to entertain the children this summer? Did you know that you can borrow children’s books from our postal lending library? Check out some of the fab books we have available to borrow for free.

Age 5 – 8

The Five of Us by Quentin Blake

Angie, Ollie, Simon, Mario and Eric are five fantastic friends, each of whom has an unusual ability. Disaster strikes on a day out to the countryside but, working together and combining their individual powers the Fantastic Five save the day.

Avery by Marta Altes

Avery is like other birds most of the time, but sometimes, feels a bit different. But Avery is not alone.

Eagle Eyes by Jeanne Gehret

Like a river overflowing its banks, Ben wreaks havoc until he learns to recognise and control his ADHD. By the end of the book, Ben’s family wonders how they could have gotten along without his special way of seeing the world.

Age 8 -12

Of Mice and Aliens by Kathy Hoopman

When Ben and Andy discover an alien has crash landed in the backyard they’re faced with a problem. They want to help Zeke repair his ship, but why does he ask for such strange things? Can they trust him? This is a book of mystery and fun with Ben learning to cope with his newly diagnosed Asperger Syndrome and Zeke trying to cope with life on Earth, things are not always what they seem.

Monkey by Veronica Bennett

Harry Pritchard may be bullied at school and bored at home, but he’s not exactly thrilled when his mother volunteers him to visit a severely disabled patient of hers. She says it’ll do Harry good. But how can it end the bullying? Of get him a part in the drama club play? Or win the attentions of Louise Harding, the girl of his dreams? Well, Harry is in for some big surprises!

Stuck in Neutral by Terry Trueman

Shawn has severe cerebral palsy. No control over his muscles, no means of communication, no hope of improvement. Yet humour, joy and love sit alongside frustration in Shawn’s mind. His internal life is full of unseen pleasures, but his father perceives only the devastation of an uninhabited body. And Shawn suspects that as his father’s sorrow builds, so does his desire to act…

Age 13 plus

Haze by Kathy Hoopman

Seb is a loner. Brilliant with numbers but hopeless with people, he prefers the company of computers and his only friend Guzzle. Thing change for the better when he makes friends with Kristie, Madeline and Jen, and a new computer teacher, Miss Adonia arrives. However, Seb is soon caught up in a web of computer fraud and lies and turns to Madeline’s mysterious cyber friend for help.

Rules by Cynthia Lord

Twelve year old Catherine just wants a normal life. Which is near impossible when you have a brother with autism and a family that revolves around his disability. She’s spent years trying to teach David the rules from “a peach is not a funny-looking apple” to “no toys in the fish tank”. But the summer Catherine meets Kristi, the potential next-door friend she’s always wished for, her own behaviour turns everything upside down and forces her to ask “what is normal?”

Trueman Bradley – Aspie Detective by Alexi Maxim Russell

Trueman leaves his hometown of Heartville, Illinois and arrives in New York City where he is soon told that a guy with AS could not possibly succeed as a detective. However, it’s not long before Trueman’s crime-fighting skills are put to the test when he is robbed on this first day in New York and he sets about using his exceptional mathematical abilities to invent a crime-fighting equation.

e-books with BorrowBox

  • ‘I am Not Joey Pigza’ and ‘The Key That Swallowed Joey Pigza’ by Jack Gantos
  • ‘The Curious Incident of the Dog in the Night-time’ by Mark Haddon

e-audiobooks with BorrowBox

  • ‘Rent a Bridesmaid’ and ‘Clover Moon’ by Jacqueline Wilson
  • ‘Who Killed Darius Drake’ and ‘Freak the Mighty’ by Rodman Philbrick
  • ‘Peter Rabbit’ by Beatrix Potter

If you would like to become a Cerebra Library member or a Cerebra BorrowBox member to borrow books, e-books or e-audiobooks for your child to read or listen to, please contact Jan the librarian at janetp@cerebra.org.uk for more information.

Handy tips for summer holiday sleep

tips for sleeping during the summer holidays

During the summer holidays the change in routine and light, warmer nights can often make sleep difficult. It can be even harder for children who don’t sleep well anyway. Our sleep team give their top tips for getting a good night’s sleep this summer.

  • Keep the bedroom as dark as possible at bedtime. Well-fitted blackout blinds can be useful. This allows our natural melatonin to be produced.
  • In hot weather, during the day keep windows shut and curtains closed to keep rooms cooler. Open the window in the evening if you like, when there may be a little breeze.
  • Look at using cooling pads/cooling pillows if their room is very warm.
  • Avoid caffeine (e.g. Coffee, some fizzy drinks, chocolate etc) in the 6 hours before bedtime.
  • Try and keep bed and wake times consistent, eating at similar times also helps with our internal body clock.
  • Avoid exercise in the hours before bed – this raises our body temperature, which can make it harder to fall asleep.
  • Using visual resources can help with changes to routine (visual timetables, social stories, checklists etc).
  • Use a fan to help keep bedrooms cool – the white noise it produces can also be quite calming.
  • Spend an hour before bed engaging in calming/relaxing activities (if you are away take some with you).
  • If bedtime during holidays is significantly later than during school, spend the last week of the holidays slowly bringing this earlier by 15 minutes a night. This is much easier on our body clock than a big change in one night.
  • Run cold water over wrists and feet before bed to help keep cool, or have a bath before bed as this helps to cool the body. Try to avoid very cold showers as these can be stimulating.
  • Play calming music/white noise at bedtime and throughout the night to drown out the noise of others playing outside.

We hope these tips have helped but if you need more personal support our team would be happy to help. Visit our sleep pages for more information.

Travel insurance covering children with disabilities

travel insurance covering children with disabilities

At this time of year, one of the questions coming in to our helpline is about travel insurance that will cover children with pre-existing conditions. Many people have travel cover potentially included with a service they already use, such as car insurance, a membership subscription or a bank account, but they have looked in the small print and found that pre-existing conditions are excluded.

Should you be in this position and wish to know where to find an insurer that will provide cover, the list below is a place to start. Some of these companies only cover for certain conditions.

Listing these companies does not imply that Cerebra recommend any of them, only that we know they are there. Please make sure you check that they are suitable for your needs.

Insurance companies

A holiday advice organisation that may know of other insurers is Tourism for All.

Other things worth thinking about before travelling

Government advice about travel with disabilities, which includes insurance, booking, taking medication abroad, law, access, finance, airports and so on.

For travel in the UK, the National Key Scheme for access to toilets for people with disabilities (not all toilets are kept locked, but for those that are), http://nks.directenquiries.com/nks/page.aspx?pageid=10&tab=National+Key+Scheme&level=2 and

For travel in Europe, a European Health Insurance Card (EHIC) is needed. These cards should be free of charge but they go out of date, so if you already have one it is worth checking that it will still be valid when you travel.  Further details: http://www.moneysavingexpert.com/travel/free-ehic-card.


This article was first written in June 2015. Updated August 2018.

Epilepsy and getting a better night’s sleep

Jonah and Louise

Louise recently contacted our Sleep Service for some advice to help 9-year-old Jonah get a good night’s sleep. Jonah has recently been diagnosed with frontal lobe epilepsy and Louise told us their story.

Jonah has never been a great sleeper and not having a good night’s sleep just became a normal part of life for our family.

For a while we were trying to push him to sleep in his own room but then we starting noticing that something wasn’t quite right. He was making strange, rhythmic movements in his sleep.

We saw Jonah’s GP who told us to keep an eye on it but it steadily got worse. He would be waking up 3-5 times a night and this eventually developed into dystonic posturing – his right arm would go in the air and his leg would go stiff.

We started filming Jonah at night so that we could show the GP that his condition was worsening and of course, having so many seizures every night meant that none of us were getting much sleep. It was taking a toll on all of us and I began to feel extremely guilty about having tried to make him sleep in his own room when he’d been having seizures all along.

By February 2018, Jonah had been referred to an epilepsy specialist and we finally had enough evidence to show that Jonah was getting worse and they were able to diagnose him from this. They put Jonah on medication to help manage his seizures and he responded straight away which was great but it made him very tired in the day. This wasn’t helped by the fact that he still wasn’t settling well and he still didn’t want to be in his own room – part of me still wanted to keep an eye on him in case he had a seizure.

That’s when a friend suggested that we contact Cerebra’s Sleep Service for support. We received our sleep pack and immediately started using some of the tips that were in there.

Self-settling was the most important thing for us to get Jonah into the habit of doing because it meant that we wouldn’t have to intervene if he did wake in the night – he would just settle himself. We used the gradual withdrawal method to so that it was a gentler process for both us and Jonah and if he woke up during the night, we would just take him straight back to his room.

I first noticed an improvement about two and a half weeks in when Jonah got up in the middle of the night to use the bathroom and took himself straight back to bed. We were thrilled!

We’re now six months down the line and the change in not just Jonah but the whole family is unbelievable. I had been finding it more and more difficult to function in work because of the lack of sleep but now I’m doing much better and Jonah is also doing much better at school because he is now able to concentrate much better. We’re even moving him into his own big bedroom.

The Cerebra Sleep Service has been great because a lot of the sleep advice you usually find is for much younger children, but their advice really helped not just Jonah but the whole family finally get a good night’s sleep!

You can find out more about our Sleep Service and the support we offer here.

The accessibility of Disabled Facilities Grant application forms

A survey has found that about half of local authorities in England do not make application forms freely available for home adaptation grants – known as Disabled Facilities Grants.

Key findings included:

  • The law imposes strict timescales for the processing Disabled Facilities Grants (DFGs) – but if local authorities withhold the application form, they can deny individuals their right to apply for a grant and stop the ‘clock ticking’ for the purposes of the statutory timescales.
  • As the research report notes, a failure to make forms available is not only frustrating the will of Parliament (para 5.02) it is also frustrating the will of the Government, which has increased significantly the relevant grant to local authorities for DFG awards (para 2.15-2.17);
  • Given the prevalence of the problem identified by the research it suggests that the Secretary of State for Housing, Communities and Local Government should use his powers to ensure that failing local authorities act in accordance with the law and relevant guidance (para 5.11).

The Research was funded by the disabled children’s charity Cerebra and undertaken by students at the School of Law, Leeds University under the supervision of Professor Luke Clements with support from the Access Committee for Leeds a Disabled People’s Organisation with national expertise in home adaptations.

Download the full report (PDF)

Last year a similar research project, concerning adaptations to family homes to accommodate the needs of young people with Autistic Spectrum Disorders suggested that adaptations of this kind were highly cost effective (that an investment in adaptations amounting to £300,000 had avoided social services expenditure of about £1.5 million – ie a five-fold return on the investment). You can read the 2017 report here.

Disability related expenditure and pets care costs

A survey has found that many disabled people are unable to afford to keep a pet dog or cat due to the impact of council charges made for their social care support.

A survey of 46 English social services authorities found that eight out of ten would not make allowances for pet care expenses ‘in any circumstances’ when calculating the charges disabled people were required to pay for their social care services.

Background

For many disabled people their pet is of incalculable importance to their sense of well-being. Many experience severe isolation and for many their pet is their main companion. The report outlines the evidence suggesting that pets can have profoundly beneficial impacts on key measures of well-being: physical, mental and emotional – as well as providing for many a sense of security.

This research appears to be the first concerning the impact of local authority social care charging on pet owning disabled people living in the community.

Findings include:

  • Despite the evidence concerning the generally positive impact of pet ownership on well-being and the many social policy references to pet ownership as a potentially innovative mechanism for addressing eligible social care outcomes for disabled people, no local authority had a written policy concerning the treatment of such expenditure (para 7.07).
  • Only five authorities (11% of the sample) indicated that such costs could be taken into account ‘in any circumstances’ – although on analysis it appears that nine (19%) would in fact be prepared to consider such costs ‘on a case by case’ basis (para 7.07).
  • Local authority charges that ignore pet care costs will subject disabled people to severe hardship. After paying their council’s social care charge, disabled adults under pension age are likely to be left with no more than £75.25 per week (and in some cases as little as £48.17) from which they are expected to pay for (among other things) their food, gas, water, electricity, telephone bills, travel costs, clothing, house repairs, equipment purchase, insurance expenses and recreational activities (para 4.04).

The research recommendations include that the Secretary of State for Health and Social Care require that where reasonable pet care costs be taken into account for charging purposes (by amending the list of items in the Statutory Guidance at Annex C para 40).

The Research was undertaken by students at the School of Law, Leeds University as part of the School’s Cerebra Legal Entitlements and Problem-Solving (LEaP) Project and pro bono programmes under the supervision of Professor Luke Clements and Sorcha McCormack.

Download the full report (PDF)

Ask, Listen, Do

Do you care for a child or young person with a learning disability, autism or both? Have you ever raised a concern or a complaint about the education, health and social care services they receive? And you have been left feeling frustrated by the response you received?

Then you may well be interested in NHS England’s Ask, Listen, Do project which Cerebra is now involved with. The project is aimed at supporting organisations to learn from and improve the experiences of people with a learning disability, autism or both, their families and carers when giving feedback, raising a concern or making a complaint.

The project includes the development of resources to support good practice in organisations across health, education and social care, and guidance for people, families and carers so that they feel empowered and confident to speak up.

The project listened to people’s experiences of giving feedback, raising concerns and making complaints at events all over England. They also carried out a survey which nearly 1,300 people took part in. Some of the main results from this survey were:

  • Nine out of ten people said that they had wanted to raise a concern or make a complaint at some time
  • Two out of three people said they sometimes or never knew how to do this
  • Seven out of ten people said that they did not feel that their complaint(s) had changed the way the organisation supports people as a result.

As a result of the survey Ask, Listen, Do realised that feedback, concerns and complaints systems (and safeguarding and access to justice) do not seem to work as well as they should across education, health and social care for children and adults with a learning disability, autism or both and their families.

That reflects in part their journey through many complex systems in education, health and care and the many barriers and difficulties they face. The systems and processes are also very complicated. There is also not a good enough understanding about how to listen to families or children, young people and adults, and the reasonable adjustments needed to do that. People and their families are often not included or do not feel that feedback and other systems work for them and do not take part in them.

It must also acknowledge a perception that sometimes families can be seen as difficult and challenging, which can get in the way of organisational listening and learning.

Who do they work with? They are working with national partners, including the Local Government and Social Care Ombudsman, Parliamentary and Health Services Ombudsman, Directors of Adult Social Services, Local Government Association, Care Quality Commission, Department for Education and others, along with families and people themselves. The idea is to work together to help all organisations make it easier for people and their families, children and adults, to give feedback, raise a concern and make a complaint and to know that it will make a difference through the Ask, Listen, Do approach, set out below:

and through the Ask Listen Do principles, set out below:

Ask, Listen, Do are seeking to influence and change organisational behaviours and approaches through the Ask., Listen, Do approach and the help of families, carers and national partners in education, health and social care.

One example already achieved is that NHS Improvement will include Ask, Listen, Do in their new learning disability standards which is to be issued soon. Another example is that the Department for Education commissioned Whole School SEND to work with families and NHS England to coproduce a guide to help make conversations about their children and young people count for all families in all schools. This can be found here.

They have also produced a Top Tips leaflet for families to help empower them in understanding and dealing with these complex systems, and training and other resources to support organisations.

The project is now launching on social media at #AskListenDo and you can find out more about Ask Listen Do on their website.

Overcoming sleep terrors

In this article we take a look at what sleep terrors are, give advice on how to overcome them and explain how our Sleep Service helped Rachel and her mum.

Like any other ten year old, Rachel was desperate to have a sleep over at her friend’s house. However, Rachel has autism and the anxiety she experiences meant that she felt unable to sleep without her mum in the bed with her. She had never managed a full night in bed by herself.

Her mum, Helen, was also concerned about Rachel’s screaming episodes during the night when Rachel would run around the house, appearing terrified and screaming, but unaware of her surroundings. Her GP explained to Helen that these were sleep terrors (sometimes called night terrors) and were likely to be just a stage that Rachel was going through.

Rachel’s sleep terrors sometimes happened twice during the night and Helen was worried about Rachel’s quality of sleep as well as the disruption caused to the whole family. Needing advice and support Helen contacted Cerebra’s Sleep Service.

One of our Sleep Practitioners, Pattie, gave Helen some information and advice on sleep terrors.

If your child is experiencing sleep terrors, it is important to seek medical advice to confirm the diagnosis and to rule out any other causes for the behaviour.

What are sleep terrors?

Sleep terrors are episodes that can that occur when a person is in a deep stage of sleep – usually within the first few hours of going to sleep. NHS guidance says that they most commonly occur between the ages of 3 and 8, but that a child’s developmental age may also need to be taken into account. When experiencing a night terror a child may:

  • Appear frightened
  • Scream
  • Cry
  • Thrash around
  • Appear confused
  • Not respond to the parent / carer or push them away

It’s important to be aware that although the child may seem agitated, they are likely to be unaware of this event and probably won’t have any memory of it in the morning. It’s more distressing for the person who witnesses it. Episodes usually last less than 15 minutes but in younger children, or in those with developmental delay, they may last quite a bit longer.

Some things that may make sleep terrors worse:

  • Changes in sleep patterns
  • Infections/ fever
  • Anxiety/ stress
  • Inadequate sleep
  • Medications that causes certain changes in sleep
  • Caffeine
  • Sleeping with a full bladder
  • Noise and light
  • Sleeping in a different environment
  • Sleep-disordered breathing
  • They may occur more frequently in certain conditions, for example Tourette Syndrome
  • Family history of night terrors or sleepwalking

Suggestions which can help you to manage sleep terrors:

  • Keep bed and wake times consistent
  •  Sleep deprivation can make it worse, so ensure that other sleep problems are managed where possible
  •  Ensure your child is in a safe environment
  •  Inform other caregivers e.g. if your child attends respite or sleepovers etc
  •  Avoid stimulants e.g. caffeine
  •  Avoid waking your child up during an episode as this can prolong a night terror or cause agitation
    If your child leaves the bed then gently guide them back to bed
  • Avoid comforting or other interference as this can also prolong the episode
  • Avoid discussing it with your child the next day as this may cause anxiety, and possibly more disturbed sleep
  • If the episodes happen at a predicated time each night, you could try scheduled waking. This is where you wake the child up 15 minutes before the episode occurs for a few nights (or more in some cases) and then let them go back to sleep and this can often break the cycle.

How did Helen and Rachel get on?

Since Rachel and her mum were also keen for Rachel to be more independent at night-time, Pattie also advised them on how to implement gradual withdrawal. This is a method which involves gradually increasing the distance between parent and child over a period of time. In this case, Helen used a camp bed and set this up in Rachel’s room. Every few days Helen moved this gradually a bit further away from Rachel’s bed until she was out of the room.

She also worked hard to ensure Rachel was calm at bedtime with a relaxing routine as well as keeping the wake times consistent each day (including weekends). You might find some tips in our Anxiety Guide useful.

After two months, Rachel’s sleep terrors had reduced considerably, and Helen got in touch to say how pleased she was that Rachel had managed to sleep over at her friend’s house for the night. Rachel also called Pattie first thing the following morning, as she had been so happy that she had managed to do it!

If you’d like some advice on managing sleep terrors, or other sleep issues, don’t hesitate to get in touch with us.

Cookies Policy

The Cerebra website uses a small number cookies to assist us in providing the best service we can to our visitors. Cookies are small files of data that are stored for varying lengths of time on your device. They cannot be used to identify you personally. By using our website you are agreeing to their use but you can change the settings on your web browser to prevent this. Viewing of the Cerebra site will still be possible but there may be a reduction in functionality. More information on cookies and how to delete and disable them can be found at www.aboutcookies.org.

First party cookies

First party cookies are our own cookies that are controlled by us and used to provide information or functionality specific to the services we provide. The Cerebra site currently does not use any first party cookies.

Third party cookies

These are cookies found in other companies’ internet tools which we are using to enhance our site, for example Google, Facebook and Twitter have their own cookies, which are controlled by them.

Below is a list of the cookies currently in use on the Cerebra website. Further details can be obtained from the providers of those services.

Provider Name Purpose More info
Google Analytics _omappvp
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These cookies are used to collect information about how visitors use our site. We use the information to compile reports and to help us improve the site. The cookies collect information in an anonymous form, including the number of visitors to the site, where visitors have come to the site from and the pages they visited. Google Privacy policy
Our full privacy policy can be viewed here.

Privacy Policy

Who we are

We’re the charity that helps families who have a child with a brain condition to discover a better life together.
This policy and our Cookies Policy sets out how Cerebra – For Brain Injured Children and Young People, uses and protects your personal information, including data from your use of our website.

Cerebra is the Data Controller for personal data about families we help, professionals, supporters, event attendees, grant applicants, volunteers and newsletter subscribers. For the purpose of this document we will use the group term ‘supporters’ to describe any one of these groups.  Our ICO registration number is Z6201581.

We do not trade personal data for commercial purposes and will only disclose it if required by law, if it is necessary to arrange your event attendance, or if it is with your consent. Cerebra uses providers based in the European Economic Area to process supporter data.

Cerebra is registered with the Information Commissioner’s Office under number Z6201581 is a registered charity under number 1089812 and a registered company limited by guarantee under number 4336208 (England and Wales).

You can change how we contact you at any time, simply by contacting us by email at contactcare@cerebra.org.uk or calling us on 01267 244200.

As part of our commitment to you, we have appointed a Data Protection Officer, whose name is Ralph Nicholls. You can contact Ralph, either by writing to:

The Data Protection Officer,
Cerebra,
2nd Floor Lyric Building,
King Street
SA31 1BD

or emailing: dpo@cerebra.org.uk or using our contact form.

This policy was updated to show that we are adhering to the new General Data Protection Regulation (GDPR), which came into force in May 2018.

Our promise to you

Cerebra promises to respect and look after all personal data you share with us or that we get from other organisations.

We will always keep it safe.

We aim to be clear when we collect your data about what we all use it for, and not to do anything you wouldn’t reasonably expect.

We will never sell your personal data to other organisations, and we will only ever share it in appropriate, legal or exceptional circumstances.

What personal data we collect and why we collect it

The type and quantity of data we collect and use depends on why you have provided it.

We will only collect, use and otherwise handle your personal data:

  • where you have consented to this for specified, explicit and legitimate purposes
  • where this is necessary to fulfil legal obligations that apply to us
  • where it is necessary for our legitimate interests relating to running our daily operations, as long as, in each case, these interests are in line with applicable law and your legal rights and freedoms.

Research

Much of the work we do involves carrying out research. If you agree to take part, we will record responses to questions that you give us, and your personal details.

This data will be used to fulfil our research objectives, and may be shared for relevant projects. Your data will remain anonymous unless you consent to it being disclosed.

The data we collect will be kept for five years.

Services

Cerebra offer a wide range of information and advice services to families, and professionals.

We will collect your contact details and preferences, and any other data that is relevant to delivering the service to you.

This information will only be used for the purposes of the service and not shared with the rest of Cerebra unless you give us permission to do so.

We will keep the data for up to six years, in line with contracts and government regulations.

Children’s data

Although children under 16 can fundraise with the consent and support of a guardian, we do not record their contact information. Instead, their parent or guardian’s details are recorded (with their contact preferences). Individuals over 16 can be recorded but still require a guardian as reference (for school contacts this can be a teacher).

For our services, the service is always provided to the family or parent. Data is supplied to us where we have a legal basis to collect and retain that data as per the contracts, or included in the case notes provided, for example by paediatricians or in independent support where there is a young person involved. This information is not shared with anyone not connected to providing the service.

We will keep the data for up to six years, in line with contracts and government regulations

Helpline

We run a support and information helpline.

We record only the data needed to help your enquiry. This data is not shared in any way and will not be used to contact you about other services or offers from Cerebra unless you give us permission to do so.

We will keep this data for one whole financial year after you contact us.

Supporters

If you support us, for example by signing up to an event, donating, signing up to Gift Aid, or signing up to a campaign, we will usually collect your name, contact details, and whether you would like to be contacted, and how we would do so. If appropriate, we may also ask to collect your date of birth, financial details, Gift Aid eligibility, reasons for support, information relating to health and disability, and responses to our campaigns. We will also ask if we can share your story for publicity purposes.

We collect this data so we can keep you up to date with information and products you have requested, or may be interested in, and to ask for more support, in the way that you have chosen; to run our events; and to fulfil our legal responsibilities for financial and Gift Aid reporting.

We will keep your data only for as long as necessary. If you have kindly donated to us, we are required to keep this data for seven years. If you have not donated to us, we will only keep your data for three years.

Volunteers

If you volunteer with us, or enquire about our volunteering opportunities, we will usually collect your name, contact details, emergency contact details, bank details, contact preferences, ethnicity, gender, availability to volunteer, disability (including physical and mental conditions) and criminal convictions.

We collect this data so that we can contact you about volunteering opportunities that come up; so that we ensure the safety of our volunteers, staff and customers; can pay expenses; carry out our awards programme; and to help us anonymously measure our inclusion and accessibility across our volunteering programmes.

We will keep this data for two years after you stop volunteering for us.

Gift in Wills

If you plan to leave a gift in your Will to Cerebra we will collect your contact details and contact preferences. We will also do this if you tell us you are you are thinking about leaving a gift to the charity or would like more information on how to do so. We will use this data to keep in touch and send you other information and products that you are interested in. This data will be kept on file long-term, as hopefully it will be many years before your gift is realised. If you change your mind then we will only keep this data for three years

In order to administer bequests, solicitors, executors will provide us with details of the deceased, the corresponding executors, solicitors and where necessary other beneficiaries. This data will be kept by us and shared with our legacy administrators for the purposes of administering our legacy income. On occasion we may share this data with other parties such as co-beneficiaries, third party experts and any other person(s) involved with the estate for the purposes of administering legacies only. The data will be kept on file indefinitely.

Storytellers

Some of our families and supporters kindly tell us stories about their experiences to help us in our publicity and fundraising campaigns. If you are happy to do this we will ask you to complete a publicity consent form.

We will record the details of the story, including photographs, and contact details to enable us to get updated approval to use the story should this be deemed necessary.

We will keep this data for five years after you give it to us.

Photography

Our families, supporters and volunteers kindly let us use photography and images of them to help our campaigns and activity come to life.

We keep these images stored in a secure location and will only use them with the subject’s permission.

We keep these images for five years after we have been given them, unless you ask otherwise.

E-newsletter (News Flash)

We use third-party providers, Mailpoet and ElasticEmail, to deliver our monthly e-newsletters. We collect statistics around email opening and clicks using industry standard technologies including clear gifs to help us monitor and improve our e-newsletter. For more information, please see  Mailpoet privacy notice and ElasticEmail privacy notice.

Complaints

Should you wish to register a complaint we will collect your name, contact details and details about the complaint to enable us to respond, monitor and improve our organisation.

This data will be shared with any parts of Cerebra or any third parties who are involved in resolving the complaint, for example, agencies that we have partnered with.

We will hold this data for six years.

Website

When someone visits cerebra.org.uk we use a third-party service, Google Analytics, to collect standard internet log information and details of visitor behaviour patterns. We do this to find out information, such as the number of visitors to the various parts of the site.

If we want to collect personally identifiable information through our website, we will be up front about this. We will make it clear when we collect personal information and will explain what we intend to do with it. We will collect any questions, queries and feedback you leave. This will include your email address if you send us an email, your IP address, and which web browser (and version) you use. Information on how people use the site, through cookies and page tagging, helps us improve our website and our services. Find out more about our link to Cookies Policy.

We may also pass on your personal information to online advertising tools, including Facebook Custom audiences, Google AdWords Match and Google Analytics to carry out ‘remarketing activities’. These third-party vendors may use cookies to serve these ads based on your previous visits to our website.

We might also obtain your personal data through your use of social media such as Facebook, Instagram, Twitter or LinkedIn, depending on your settings or the privacy policies of these social media and messaging services. To change your settings on these services, please refer to their privacy notices, which will tell you how to do this.

Suppression List

Should you not wish Cerebra to contact you in the future, we will hold your contact details on file. This will enable us to ensure that we comply with your wishes.

We will hold this data indefinitely. Should you wish to engage with Cerebra again then please get in touch with us at contactcare@cerebra.org.uk.

Phone Recordings

Cerebra records some calls to help train our staff and for legal purposes.

The records will be deleted after two years.

Who we share your data with

Unless we are required to share your data for legal or regulatory reasons, to help with a complaint, to administer a Gift in Will, provide requested services or to keep your record up to date, we will never share your data with other organisations without your permission.

We do use third-party organisations to help us collect donations such as JustGiving, and to help us fulfil our marketing. Where we use external companies to collect or process data on our behalf, we carry out comprehensive checks on these companies, and put in place contracts to control how they manage the data they may collect or have access to.

Cerebra uses providers based in the European Economic Area to process supporter data.

How we protect your data

At Cerebra we ensure that the most appropriate technical controls are in place to keep your data safely. Access to your data is regularly reviewed and only accessible to the relevant trained staff, volunteers and contractors.

Where we use external companies to collect or process data on our behalf, we carry out comprehensive checks, and put in place contracts to control how they manage the data they may collect or have access to.

Your data will be hosted on servers located in the UK, which will not be transferred out of the European Union, or in the case of our ElasticEmail, the data will be stored in Canada and or the US.

What third party data, automated decision making and/or profiling we do

To help us ensure that we only hold accurate and up to date data, we regularly use third-party data sources to clean our data. These data sources include UKDataHouse and the Post Office.

We carefully manage the communications we send you to ensure that we are contacting you in the most appropriate way and that we are not sending you unwanted communications. To do this, we may combine the information that we collect about you and analyse what we know about your interests, preferences and level of potential engagement or donation. We may use data that we have not directly collected from you, such as information from Companies House, Media, and Dun and Bradstreet. We may also use statistical analysis on this data to understand the likelihood that you will be interested in or responsive to a campaign or message.

You can opt out of your data being combined and analysed for marketing purposes by contacting us at contactcare@cerebra.org.uk. However, this may mean that you stop receiving marketing communications from us more generally

What rights you have over your data

We will only collect the data that we need to carry out the purposes you have contacted us for, or given us permission to use it for.

To enable us to carry out the purposes you have contacted us for, there will be occasions when we will make some data collection mandatory i.e. your name and address to claim gift aid, or your email address to access our services. If you don’t provide this data, we cannot carry out the purposes you have contacted us for.

We will always tell you why these fields are mandatory.

As an individual whose personal data is processed by Cerebra you have the following rights:

To exercise any of these rights, please use the contact form to get in touch.

If you are not happy with the way we have handled your data, and are unable to resolve the issue with us personally, you can complain to the ICO.