Annual Review 2015 2016

2015-2016

Annual Review

Providing expert support to people affected by neurological problems

Introduction from the CEO 1 in 6 individuals in the UK are living with at least one of

350+ known brain and spine conditions

More than 12 million people in the UK have a neurological condition...

And many more are experiencing symptoms like headache, pain and dizziness but don’t have a diagnosis. There are more than 350 neurological conditions; some are relatively well-known, such as stroke, dementia and vertigo.

Others, such as Chiari malformation and subarachnoid haemorrhage, are much rarer. At the Brain & Spine Foundation we provide people with information and support on all of these conditions.

If you have a neurological condition it’s likely to be long term, even lifelong, and there may be no prospect of a cure. Living with symptoms like pain, fatigue and depression, often experiencing a lack of understanding among friends and family or even health professionals, can be very hard.

Sadly, patient experience is often poor, particularly around diagnosis. We know that 58% of neuro patients have had problems accessing services or treatment and around 40% waited over a year after noticing symptoms before they saw a neurology specialist. It’s widely recognised that there aren’t enough specialists in the UK; the average European country has three times as many consultants as the UK per person. In addition to this, GPs have said they’re concerned about the waiting time between referral and seeing a neuro specialist and a recent study showed that 85% felt they would benefit from further training to help with identifying and managing neuro patients.

The impact of all this on patients is significant and it’s vital they have somewhere to go for help. This is a serious problem and that’s why our new strategy is all about doing more for people affected by neurological problems.

We want to be there for everyone who needs us.

Alice Doyle CEO

Our mission To improve the quality of life of people affected by neurological problems by providing expert information, support and education

Neurological conditions and associated treatments are often complex and difficult to understand but the Brain & Spine Foundation is here to inform and support people throughout their own or their loved one’s patient journey.

In fact, we’re the only UK-wide charity providing this support and to fund our work we’re entirely dependent on voluntary donations.

I cannot thank your team enough for listening and pointing me in the right direction ... if not for that we would still be at home wondering what was to become of us! Thank you for giving me my husband back.

Our goals 1

Provide quality information and support for people affected by neurological problems throughout their journey

2

Improve understanding and awareness in order to enhance the experience of patients

3

Raise the profile of the Brain & Spine Foundation to enable more people to access support

4

Secure the income to sustainably fund the charity’s work

What is a neurological condition?

Neurological conditions result from injury or damage to the brain, spine or nerves. The term ‘neurological’ comes from neurology – the branch of medicine that deals with problems affecting the nervous system. The word neuro means nerve and nervous system.

Some neurological conditions are present from birth (congenital), some hereditary (genetic) and others have a sudden onset due to injury or illness, such as a head injury or stroke, or a cancer of the brain or spine.

Representation of a nerve cell

About our work This year we produced a new strategy, working with our users, staff team and trustees. Our new mission statement and strategic goals reflect our ambitious plans to reach more people affected by neurological problems.

Provide quality information and support Our neuroscience nurses answered

2714 enquiries on 173

different neurological topics

Distributed more than 47,000 NHS Information Standard-accredited booklets and fact sheets... 25% more than last year

572,000 people

visited our website and online discussion forum

Improve understanding and awareness Campaigned with the Neurological Alliance for better support for people with neurological conditions

Joined the NICE neurology guideline as a stakeholder to improve how neurology patients are diagnosed, referred and managed by health professionals

Contributed to NICE guideline development on topics including lower back pain, brain tumour and cerebral metastases

Circulated over

1000 “not all

disabilities are visible� car stickers

Raise profile to reach more people Distributed 700 leaflets and posters to specialist centres, neurology departments and other neuro charities

Attended and spoke at events with neuroscience nurses, multi-disciplinary teams, rehab teams and patient groups, including BANN and ACPIN annual conferences

Grew our social media presence and messaging to raise the profile of our work and increase awareness of neuro issues Facebook engagement

up 29%

Twitter engagement

up 18%

Across the UK, eight volunteer community ambassadors are working hard to raise awareness of the Brain & Spine Foundation and to encourage fundraising for the work we do. Carolyn Turner is our community ambassador in Leicester.

I first contacted the Brain & Spine Foundation in 2013 following surgery for a spinal tumour. After I was discharged from hospital I felt very much on my own. I didn't know anyone else who had had a spinal tumour and there was no one to talk to regarding my ongoing symptoms.

Carolyn (third from left) at her beauty therapy fundraiser

I came across the Brain & Spine Foundation by chance as I trawled through the Internet and spoke to the neuro nurses who were really helpful. It was really reassuring having someone to speak to who understood how I was feeling, and gradually as I began to feel stronger I wanted to get involved with fundraising and an awareness campaign.

94%

of people rated the support they received from us

fair to excellent

93%

85%

of people said they felt

of people said they felt

more informed

more able to cope with everyday life

after contacting us

after accessing our services

Figures based on the results of 2014-15 beneficiary survey.

Our supporters Thank you so much to all of our fantastic volunteers, fundraisers and corporate supporters. Our work is entirely funded by donations and we could not provide the services we do without you all. The following are some of our 2015/2016 supporters: Clacton Triathlon, Peter Storrs Trust, The Golden Bottle Trust, The Henry Smith Charity, The Richard Burns Foundation, all of our London Marathon runners, all of our event participants and the many generous people who left us a gift in their Will.

Holly

Event fundraiser and volunteer

At the age of 19, Holly was diagnosed with Arnold Chiari Malformation Type I, a rare and painful lifelong neurological condition that causes part of her brain to push down on the top of her spine.

Now 21, Holly is determined not to let her condition hold her back and in December 2015 she completed the Glasgow Big Fun Run in aid of our charity.

Last year I ran and fundraised in aid of the Brain & Spine Foundation. These people are the only individuals I’ve ever met who already knew what my condition was and I’m finally amongst people who “get it”. I cannot thank the Brain & Spine Foundation enough for their support.

John

Clacton Triathlon organiser

The annual Clacton Triathlon is a very special event because since it began in 1999 all of the funds raised have been donated to the Brain & Spine Foundation. Over 16 years, the Triathlon has raised more than £80,000, bringing in a massive £4,757 in 2015 alone.

One of the event co-ordinators, John Kedge, is another of our community ambassadors who is committed to raising funds and awareness.

It is for our colleague, who is quadriplegic, and for other friends affected by brain haemorrhage, stroke and spinal tumours that we organise the annual Clacton Triathlon in aid of the Brain & Spine Foundation.

Clive

Trustee of Brain & Spine Foundation, has pledged a gift in his Will

I’ll never forget being told my nine year old daughter had suffered a brain haemorrhage.

The neuro team that saved Lucy’s life were amazing but they are time pressed. Having access to a helpline to ask questions and discuss options with a neuroscience nurse would have been fantastic.

I am humbled to know that our charity is providing that understanding and comfort for people who need it and I want to ensure that work continues. That’s why I am pledging a gift in my Will to the Brain & Spine Foundation.

Christchurch Group Corporate supporter

Christchurch Group are the sponsor for our conference in November 2016 − the UK's first for people affected by subarachnoid haemorrhage (SAH). Their support means we can bring together around 150 patients and carers to hear from neurological experts and to better understand how SAH can affect lives and how to manage any after effects.

We are happy to support the UK's first conference dedicated to subarachnoid brain haemorrhage (SAH). The conference, run by the Brain & Spine Foundation, is a great opportunity for patients, colleagues and carers to meet, share stories and hear from neurological experts to better understand how SAH can affect lives.

- Professor Mike Barnes, Group Clinical Director

How your money helps could run our telephone and email Helpline service for one hour

could provide a hospital with a box of our NHS Information Standardaccredited booklets

could help us develop a new essential health information resource such as a fact sheet or a video

could cover the cost of running our neuroscience nursestaffed Helpline for one week

How you can get involved Fundraising Sign up to a sponsored event (such as a marathon or other sporting challenge) or ask us for a fundraising pack to get some more event and activity ideas.

Donating or payroll giving You can make a donation directly through our website (www.brainandspine.org.uk).

Alternatively, payroll giving is a way to give regularly on a tax-free basis, meaning your donation costs you less.

Send us your story Personal stories are a great way of raising awareness of neurological conditions and also supporting others who’ve had similar experiences.

Volunteering Giving up your time to help out at events or in our office is a huge support.

Our supporter promise The Brain & Spine Foundation is entirely funded by our generous supporters. We are hugely grateful to everyone who gives us their time and their donations.

As members of the Institute of Fundraising we pride ourselves on working to the high standards that they set and promise that all donations will be used responsibly to help people affected by neurological conditions.

You can contact us at any time with feedback on info@brainandspine.org.uk or 020 7793 5900.

Financial data This year we've invested funds in the infrastructure of the organisation to support future growth. This included increasing the size of the Helpline, adding another full-time neuroscience nurse to help us answer more calls and meet rising demand, as well as growing the fundraising team to increase capacity. During the year we moved to a larger office space to accommodate our bigger team. Our new fundraising strategy sets out clear plans for diversifying and increasing income over the next period. This will underpin our ability to grow the organisation further, increasing the range of support services and resources we can provide for people with neurological problems. This work is already showing results.

• Expanded Helpline to reach more people - One full-time neuroscience nurse hired

• Investing in fundraising - Bigger fundraising team - New fundraising strategy to increase and diversify income

The organisation finished the year with £317,096 in reserve, which equates to just over eight months of operating costs. This year was a time of preparation for the future, and the financial position gives a solid base for the coming period of growth and development.

Income (in £) Donated services Events fundraising Legacies Donations and gifts Grants Other (£1151)

For every £1 we raise, 19p is spent on fundraising and 81p on our support services

Expenditure (in £) Education and information Costs of raising funds

Thank you for being there at a time when I felt very isolated, confused and unwell.

Plans for the future We have ambitious plans for the next stage of our strategy to develop our support and information services that will improve the quality of life of people affected by neurological conditions.

Build on the development of the Helpline team to meet increasing demand for support.

Expand our range of resources and develop new ways of providing

information e.g. using videos.

Introduce Facebook groups for key condition areas, to provide a

space for patients and their families to access mutual support.

Run our first conference for patients and families on subarachnoid

haemorrhage in November 2016 at the National Hospital for Neurology and Neurosurgery, Queen Square.

Execute our communications plan, raising awareness of neurological problems and improving the profile of the charity’s work.

Develop the outreach programme, building relationships with

neuro centres and departments, clinical nurse specialists and other key clinical contacts to increase the number of people we’re able to help.

Review the role of top-level supporters in helping the charity

reach its goals, including a skills review and recruiting to build on the contributions of this group.

Continue to make improvements in our internal functions,

including a new database, developing good governance and enlisting volunteers to support the team.

When I had a subarachnoid haemorrhage in 2013 I left hospital with no information on what had happened to me or what to expect in the coming days, weeks and months. The Brain & Spine Foundation provided me with all the information I required. They sent me an information booklet which explained everything and I was able to come to terms with what had happened. They also gave me invaluable advice over the telephone and by email.

www.brainandspine.org.uk Office

Brain & Spine Helpline

020 7793 5900

0808 808 1000

info@brainandspine.org.uk

helpline@brainandspine.org.uk

Brain & Spine Foundation, LG01 Lincoln House, Kennington Park, 1-3 Brixton Road, London SW9 6DE. Registered charity number: 1098528.

A company limited by guarantee and registered in England (company number: 4432677)

/brainandspine /brainspine /BrainAndSpineCharity /company/2564601

Some of the icons in this booklet were produced and downloaded from www.flaticon.com