the little white book - Sheffield

the little

white book Sheffield and the surrounding area

A directory of resources to help people affected by a brain tumour Edition 1: November 2014

Contents Networking

2

Psychological support

6

Support groups

10

Support for carers

14

Support for children

16

Support lines

18

Financial support

20

Complimentary therapies

22

Holidays and short breaks

26

Welfare and legal advice

28

Transport services

30

Respite and end of life care

34

Bereavement support

36

What can brainstrust do to help?

38

Introduction We know how lost you can feel when you or your loved one is diagnosed with a brain tumour. But we also know how many invaluable support services there are available locally that can help you at every step of your brain tumour journey.

I’ve been a carer of a brain tumour patient for more than five years and I’m still discovering useful services in this area, particularly in the charity sector, many of which have been recommended by other brain tumour patients or carers.

Wouldn’t it be great if all the information on the best of these services was available in one place, so that you can access them quicker when you most need them? We hope that this directory does just that and that you’ll find it to be an authoritative guide to help you if you are in Sheffield and the surrounding area.

We may not have included everything here just yet, but we have been able to bring together many sources of help that we’re comfortable with and that we regularly recommend to our community. You can find the most up to date version of this information, and more online at www.braintumourhub.org.uk Things change. New services will pop up, and some may stop operating or change their focus, but we will be reviewing the information within this directory every year. If there are any additional services that you would like to see in here, please get in touch on 07741 316277 or email pete@brainstrust.org.uk Pete Burchill brainstrust Support Specialist (Sheffield and South Yorkshire) www.brainstrust.org.uk

Introduction

1

Networking

Service name

Service provider

Phone contact

Location

brainstrust Meet Ups

brainstrust

07741 316277

Venues vary.

Please get in touch for details.

Buddies Coffee Mornings

Aurora Wellbeing Centres

0300 011 1202

The Aurora Centre, Doncaster Royal Infirmary, Armthorpe Road, Doncaster DN2 5LT

Cancer Buddies

Doncaster Metropolitan Borough Council

01302 734189

Cancer Buddies, Doncaster Council, Civic Office, Waterdale, Doncaster DN1 3BU

2

Networking

The essence of networking is to share experiential sympathy and understanding which can be beyond the scope of health care professionals. Networking also allows you to meet others from the wider community – not just those who typically attend support groups. These people can include researchers, fundraisers, charity workers and other interested parties.

It is important to be aware that whilst networking events can be a source of excellent information, they are much more ‘free-flowing’ than facilitated support groups. The discussion is not controlled, opinions can be subjective, and they may not constitute medical advice.

Email and web address

Brief description

pete@brainstrust.org.uk

An opportunity for patients, carers and anyone else affected to get together socially with others and have fun.

You can share experiences and seek information from people who know what you’re going through, but only if you want to. Previous get togethers have taken place over pizza, pub grub, and afternoon tea.

www.meetup.com/brainstrust

admin@aurorawellbeing.org www.theauroracentre.co.uk

cancerbuddies@doncaster.gov.uk www.doncaster.gov.uk/cancerbuddies

Networking

Held on the 1st Saturday of each month from 10.00am to 12 noon and open to any cancer patient, their friends and family. A chance for an informal get together to share experiences whilst enjoying a well earned cuppa.

This free service is available to anyone living in Doncaster who has been touched by cancer. It offers a chance to talk to a trained buddy who has had a similar experience to you.

3

Service name

Service provider

Phone contact

Location

Headway Rotherham Social Events

Headway Rotherham

01709 581828

Venues vary.

Please get in touch for details.

Mafia Meet Ups

Sheffield Cancer Mafia

Sheffield Parent Carer Forum

Sheffield Parent Carer Forum

4

Meeting venues vary. Please get in touch for details.

0300 321 4721

Sheffield Parent Carer Forum, St Mary’s Community Centre, Bramall Lane, Sheffield S2 4QZ

Networking

Email and web address

Brief description

info@headwayrotherham.org.uk

Headway offers a wide range of opportunities to get together with others affected by a brain injury in an informal and relaxed setting. Regular socials include coffee mornings, social evenings, bowling and pool nights.

www.headwayrotherham.org.uk

sheffieldcancermafia@hotmail.co.uk www.sheffieldcancermafia.co.uk

enquiries@sheffieldparentcarerforum. org.uk www.sheffieldparentcarerforum.org.uk

Networking

A support group for anyone with cancer in their life. Meet ups vary from going for a quick coffee, to going to a pub quiz or rock gig. There’s no set time for meetings but they usually take place every six weeks or so at various venues around Sheffield.

The forum brings together parents and carers of children and young people with disabilities and special educational needs from across Sheffield to provide mutual support and exchange information. It offers regular advice sessions, workshops and coffee mornings as well as opportunities for the whole family to get involved.

5

Psychological support

Service name

Service provider

Phone contact

Location

brainstrust counselling

brainstrust

01983 292405

Various

Cavendish Cancer Care Counselling Service

Cavendish Cancer Care

0114 278 4600

The Cavendish Centre, 27 Wilkinson Street, Sheffield S10 2GB

Headway Rotherham Counselling Service

Headway Rotherham

07538 354869

Headway Rotherham, Charnwood House, Charnwood Street, Swinton, Mexborough S64 8LY

6

Psychological support

Alongside the care you receive from doctors, nurses and other health professionals you may wish to seek psychological and emotional support.

It is quite usual to experience stress, worry and concerns as a result of a brain tumour diagnosis or treatment. It may lead you to experience one or more of the following – anxiety, uncertainty about the future, anger, adjustment difficulties, distress, family communication problems, changes in body image, depression, decision-making difficulties, challenges balancing illness and treatment alongside the demands of life.

Some people can find it helpful to discuss their feelings, needs and concerns in a confidential space with someone experienced in helping patients and those close to them. Here we have some options for you.

Email and web address

Brief description

hello@brainstrust.org.uk

A programme of counselling uniquely designed for patients and carers affected by a brain tumour diagnosis.

Sessions may take place either face-toface or over the telephone depending on circumstances.

www.brainstrust.org.uk

enquiries@cavcare.org.uk www.cavcare.org.uk

info@headwayrotherham.org.uk www.headwayrotherham.org.uk

Psychological support

Counselling is one of a number of free therapies offered to anyone affected by the impact of cancer (including low grade brain tumours).

A confidential, friendly and professional counselling service available to anyone affected by a brain injury.

7

Service name

Service provider

Phone contact

Location

RCCC Counselling Service

Rotherham Cancer Care Centre

01709 375729

Rotherham Cancer Care Centre, 93 Badsley Moor Lane, Rotherham S65 2PS

St John’s Specialist Counselling Service

Doncaster Community Integrated Services

01302 796853

St John’s Information & Support Centre, Weston Road, Balby, Doncaster DN4 8JS

8

Psychological support

Email and web address

Brief description

enquiries-rotherhamcancercare@ hotmail.co.uk

Free counselling is available to anyone living in Rotherham who is dealing with a cancer diagnosis, as well as their main carer.

www.facebook.com/pages/ Rotherham-Cancer-Care-Centre/ 313202795391240 jane.clark@rdash.nhs.uk

Psychological support

Free counselling is available to all patients with cancer or a life limiting condition and their carers, friends and family members. Call in the first instance for an assessment.

9

Support groups

Service name

Service provider

Phone contact

Location

Brain Tumour Support Group

Weston Park Cancer Support Centre

0114 226 5666

Weston Park Cancer Support Centre, 23 Northumberland Road, Sheffield S10 2TX

Cancer Support Centre Coffee Mornings

Weston Park Cancer Support Centre

0114 226 5666

Weston Park Cancer Support Centre, 23 Northumberland Road, Sheffield S10 2TX

Carers CafĂŠ

Carers in Sheffield

0114 278 8942

Held upstairs in the Central United Reformed Church, Norfolk Street, Sheffield S1 2JB

10

Support groups

Support groups are a place for people to give and receive both emotional and practical support as well as to exchange information. People with a brain tumour, as well as their friends and families, find support groups to be a valuable resource where people can share medical information, get confirmation that their feelings are “normal,” educate others, or just let off steam. When someone is searching for a support group, the single most important thing to remember may be: if the group doesn’t feel right to you or doesn’t match your needs, try a different group. There are many options available.

Email and web address

Brief description

info@cancersupportcentre.co.uk

Open to primary brain tumour patients, this group runs every 2nd and 4th Monday of the month between 1pm and 4pm. The group is facilitated by a Neuro-oncology Clinical Nurse Specialist with assistance from a support worker. You can find the full programme for the year’s activities on the Cancer Support Centre website.

www.cancersupportcentre.co.uk/ supporting/brain-tumour-support- group

info@cancersupportcentre.co.uk www.cancersupportcentre.co.uk

jan@sheffieldcarers.org.uk www.sheffieldcarers.org.uk

Support groups

Held on the first Tuesday of the month, these coffee mornings are open to anyone affected by cancer. They provide an opportunity to meet other people who’ve had similar experiences.

An opportunity to meet other carers for a chat and mutual support in the heart of the city centre. Carers can go along on their own or bring the person they care for. Takes place on the 2nd Friday of each month.

11

Service name

Service provider

Phone contact

Location

Epilepsy Action Monthly Meetings

Epilepsy Action for Sheffield

0114 296 7892

Meetings take place at The Quaker Meeting House, 10 St James’ Street, Sheffield S1 2EW

Fable Epilepsy Support Group

Fable

0114 275 5335

37–39 Bedford Street, Sheffield S6 1BT

Fable Parents Coffee Morning

Fable

0114 275 5335

37–39 Bedford Street, Sheffield S6 1BT

Headway Coffee Mornings

Headway Doncaster

0808 800 2244

Takes place at Cantley Community Centre, Goodison Boulevard, Doncaster DN4 6DF

Headway Social Group

Headway North Derbyshire

07940 729544

Meetings take place at Chesterfield Community Centre, Tontine Road, Chesterfield S40 1QU

12

Support groups

Email and web address

Brief description

info@epilepsy-sheffield.org.uk

A chance to meet, find mutual support and basic advice about epilepsy in a friendly group. Everybody is welcome who is affected by epilepsy, either directly or indirectly as well as those who simply have an interest in the condition.

www.epilepsy-sheffield.org.uk

sarah-fable@btconnect.com www.fable.org.uk

sarah-fable@btconnect.com www.fable.org.uk

headwaydoncaster@gmail.com www.headway.org.uk/Branches/ doncaster.aspx

mail@headwaynorthderbyshire.org.uk www.headwaynorthderbyshire.org.uk

Support groups

This friendly and informal support group takes place every three weeks on Thursday evenings. It is open to anyone affected by epilepsy including parents and carers.

Held monthly on a Friday morning, these coffee mornings are open to parents of children with epilepsy who are in need of some support. A chance to meet others in a similar situation.

A monthly opportunity for anyone affected by a brain injury to drop in for a coffee and a chat and to share experiences with others. Runs every last Wednesday of the month from 10am to 12pm.

Takes place every second Wednesday of the month from 7pm to 9pm. A chance for anyone affected by a brain injury to spend some time with others. The group also runs regular bowling trips and other social activities.

13

Support for carers

Service name

Service provider

Phone contact

Location

Carers’ Group

Barnsley Hospice

01226 244244

Barnsley Hospice, Church Street, Gawber, Barnsley S75 2RL

Carers’ Support

Weston Park Cancer 0114 226 5666 Support Centre

Weston Park Cancer Support Centre, 23 Northumberland Road, Sheffield S10 2TX

Headway Rotherham Carers’ Meals

Headway Rotherham

01709 581828

Venues vary.

Please get in touch for details.

Spa 1877 Voucher Offer

Carers in Sheffield

0114 278 8942

Sheffield Carers Centre, 7 Bells Court, Bells Square, Sheffield S1 2FY

14

Support for carers

Being a carer is not a job you apply for. We know. It’s also one of the hardest jobs you might have to do. You could be facing looking after someone with both a cancer diagnosis and the prospect of a significantly debilitating neurological disease. Because of this it’s important that you get the help you need too. There is a lot out there for you.

Email and web address

Brief description

enquiries@barnsleyhospice.org

Anyone caring for a person with cancer or a life-limiting illness can attend this group. It meets every Friday at the hospice between 1pm and 3pm.

www.barnsleyhospice.org

info@cancersupportcentre.co.uk www.cancersupportcentre.co.uk

info@headwayrotherham.org.uk www.headwayrotherham.org.uk

lisa@sheffieldcarers.org.uk www.sheffieldcarers.org.uk

Support for carers

Help is available for anyone supporting a cancer patient. They also offer a fiveweek course specifically for carers that is led by a healthcare professional and which offers support and advice and an opportunity to share experiences with other carers.

A chance for carers of someone with a brain injury to get together with others for some food and a chat. The meals are held on the last Wednesday of every month from 7pm.

Offers a free voucher for a session at Spa 1877 on Glossop Road. When you have received your voucher, you will then need to ring the Spa 1877 directly to book a time for your session. The offer is for one voucher per carer only.

15

Support for children

Service name

Service provider

Phone contact

Location

Cavendish Children and Young Person’s Service

Cavendish Cancer Care

0114 278 4600

The Cavendish Centre, 27 Wilkinson Street, Sheffield S10 2GB

Children’s Sleep Clinics

The Children’s Sleep Charity

07912 667676

Clinics take place at the Ryegate Children’s Centre, Tapton Crescent Road, Sheffield S10 5DD

PACT Trips and Treats

Parents’ Association of Children with Tumours and Leukaemia

0114 272 4570

PACT Office, Sheffield Children’s Hospital, Western Bank, Sheffield S10 2TH

16

Support for children

500 children a year are diagnosed with a brain tumour, and there are innumerable families living with the disease. Two thirds of children diagnosed are left with a disability. Families can find communication difficult, and awareness of brain tumours in children is low; this is despite the fact that brain tumours now kill more children than any other illness in the UK. Because of these unique, and frustrating challenges there is help available for you and your child.

Email and web address

Brief description

enquiries@cavcare.org.uk

Offers supportive care and therapy to children and young people up to the age of 18 whose lives are affected by cancer to enable them to explore their feelings and express their concerns.

It also offers help to parents seeking help with concerns they have about their child.

www.cavcare.org.uk

info@thechildrenssleepcharity.org.uk www.thechildrenssleepcharity.org.uk

pact@sch.nhs.uk www.pactfriends.co.uk

Support for children

These workshops offer support for families who have issues with their childrens’ sleep. Contact the charity for details of the next clinic.

Families whose children have been affected by a tumour can access regular free trips to theme parks and other attractions. It also holds a Christmas party every year for the whole family to enjoy.

17

Support lines

Service name

Service provider

Phone contact

Location

brainstrust 24/7 Helpline

brainstrust

01983 292405

brainstrust, 4 Yvery Court, Castle Road, Cowes, Isle of Wight PO31 7QG

Cancer Information Nurses

Cancer Research UK

0808 800 40 40

Carers Support and Information Line

Carers in Sheffield

0114 272 8362

Macmillan Support Line

Macmillan Cancer Support

0808 808 00 00

18

Sheffield Carers Centre, 7 Bells Court, Bells Square, Sheffield S1 2FY

Support lines

Support lines are an invaluable service available to brain tumour patients and their carers. They are often available when a clinician isn’t, and the help can be objective. Some of the helplines are driven by patient and carer experience, meaning the person on the end of the phone may know exactly what you are going through. The phone support you receive may not constitute medical advice, but it will complement it and help you to answer questions you may have.

Email and web address

Brief description

hello@brainstrust.org.uk

With brainstrust’s 24/7, 365 days a year support line, patients, carers and families can pick up the phone or email and know that they will have an immediate, personal response.

www.brainstrust.org.uk

www.cancerresearchuk.org

For questions about cancer or further information, you can speak to a cancer information nurse between 9am and 5pm (Monday to Friday).

support@sheffieldcarers.org.uk

A free and confidential service that offers support and information about almost anything to do with your caring situation. A friendly listening ear.

Open Monday – Friday 9am to 6pm.

www.sheffieldcarers.org.uk

www.macmillan.org.uk

Support lines

If you have any questions about cancer, need support, or if you just want someone to talk to, you can call free between 9am and 8pm (Monday to Friday).

19

Financial support

Service name

Service provider

Phone contact

Location

BTRS Financial Grants

Brain Tumour Research and Support across Yorkshire

0113 247 3766

BTRS, Suite 21, The Tannery, Kirkstall Road, Leeds LS3 1HS

Ellie’s Fund Grants Ellie’s Fund Brain Tumour Trust

little brainstrust Travel Grants

20

brainstrust

Ellie’s Fund Brain Tumour Trust, PO Box 473, Scarborough, North Yorkshire YO11 9DQ 07741 316277

brainstrust, 4 Yvery Court, Castle Road, Cowes, Isle of Wight PO31 7QG

Financial support

Having a brain tumour will, at some point, impact on you financially as well as physically and emotionally. Look this tiger in the eye. The more prepared you are, the more you will be ready if you need additional support.

Much better to be proactive, than reactive. The good news is that there is a wealth (pardon the pun) of help out there.

Email and web address

Brief description

info@btrs.org.uk

They offer a small grant of up to ÂŁ200.

Patients must have been diagnosed with a primary brain tumour and be receiving treatment through an NHS hospital in Yorkshire.

www.btrs.org.uk/Our-Work/Support/ Financial-Grants

info@elliesfund.com www.elliesfund.com

pete@brainstrust.org.uk www.brainstrust.org.uk/ little-brainstrust

Financial support

Grants are available to families who have a child with a brain tumour living anywhere in Yorkshire. Applications need to be made via a hospital social worker or nurse specialist.

Developed with the support of The Smiley Riley Fund for families who have a child with a brain tumour.

These small, non-means tested grants can help with the costs of travel to hospital for treatment and follow up.

21

Complimentary therapies

Service name

Service provider

Phone contact

Location

brainstrust hypnotherapy service

brainstrust

01983 292405

Various

Cavendish Therapies

Cavendish Cancer Care

0114 278 4600

The Cavendish Centre, 27 Wilkinson Street, Sheffield S10 2GB

22

Complimentary therapies

There are many reasons why people choose to use complimentary therapies. Some people find they help them cope with the stresses caused by cancer and its treatments. Many therapies are relaxing, and may lift your spirits when you aren’t feeling your best. Complimentary therapies may help you: l feel better and improve your quality of life l feel less stressed, tense and anxious l sleep better l with some of your cancer symptoms l with some of the side effects of your cancer treatment l feel more in control Read on to find out what is available near to you, and please, remember to seek the advice of your doctor before starting any new therapy.

Email and web address

Brief description

hello@brainstrust.org.uk

A programme of hypnotherapy uniquely designed for patients and carers affected by a brain tumour diagnosis.

Sessions may take place either face-toface or over the telephone depending on circumstances.

www.brainstrust.org.uk

enquiries@cavcare.org.uk www.cavcare.org.uk

Complimentary therapies

The centre offers a range of free therapies to anyone affected by the impact of cancer (including low grade brain tumours). After an initial assessment you can choose an appropriate programme of therapy.

Therapies offered include acupuncture, aromatherapy, homeopathy, hypnotherapy and reflexology.

23

Service name

Service provider

Phone contact

Location

Free Beauty and Complimentary Therapies

Aurora Wellbeing Centres

0300 011 1202

The Aurora Centre, Doncaster Royal Infirmary, Armthorpe Road, Doncaster DN2 5LT

Free Complimentary Therapies

Weston Park Cancer Support Centre

0114 226 5666

Weston Park Cancer Support Centre, 23 Northumberland Road, Sheffield S10 2TX

Nenna Kind Alternative Therapies

Nenna Kind Cancer Support Drop In Centre

01246 555514

Nenna Kind Cancer Support Drop in Centre, Dent’s Chambers, New Square, Chesterfield S40 1AH

RCCC Complimentary Therapies

Rotherham Cancer Care Centre

01709 375729

Rotherham Cancer Care Centre, 93 Badsley Moor Lane, Rotherham S65 2PS

24

Complimentary therapies

Email and web address

Brief description

admin@aurorawellbeing.org

They offer a wide range of free beauty and complimentary therapies to people locally who have been affected by cancer (or a low grade brain tumour).

Treatments include makeovers, reflexology, reiki and massage.

They have centres at the DRI and Montagu Hospitals and in Doncaster and Worksop town centres.

www.theauroracentre.co.uk

info@cancersupportcentre.co.uk www.cancersupportcentre.co.uk

nenna.kind@btinternet.com www.chesterfieldcancerdropin.org.uk

enquiries-rotherhamcancercare@ hotmail.co.uk www.facebook.com/pages/RotherhamCancer-Care-Centre/313202795391240

Complimentary therapies

Patients who are receiving radiotherapy treatment plus one carer can each enjoy four free therapy sessions. You can choose from massage, reflexology, reiki, hynotherapy or shiatsu. Call to make an appointment.

The centre offers free treatments to anyone affected by cancer, including reiki, reflexology, massage and shiatsu.

Free therapies are available to Rotherham residents with a cancer diagnosis and their main carer.

Therapies include reflexology, aromatherapy and reiki.

25

Holidays and short breaks

Service name

Service provider

Phone contact

Location

Center Parcs Short Breaks

Amy’s Retreat

0114 221 0204

Amy’s Retreat, The Workstation, 15 Paternoster Row, Sheffield S1 2BX

PACT Caravans

Parent’s Association 0114 272 4570 of Children with Tumours and Leukaemia

PACT Office, Sheffield Children’s Hospital, Western Bank, Sheffield S10 2TH

Time for Me Carers Breaks Grants

Carers in Sheffield

Sheffield Carers Centre, 7 Bells Court, Bells Square, Sheffield S1 2FY

26

0114 278 8942

Holidays and short breaks

Going on holiday is a good way to relax and get away from things.

Many people like to plan a holiday for the end of their treatment. Others want to go before or even during treatment. Whether you’re travelling for work or play, talk to your doctors and nurses to help you plan. They may be able to suggest a good time to go, as well as help to decide what is realistic for you. Here are some people that could make organising your next holiday that bit easier.

Email and web address

Brief description

info@amysretreat.org.uk

Provides short breaks to Center Parcs for families who have children with cancer.

www.amysretreat.org.uk

pact@sch.nhs.uk www.pactfriends.co.uk

sue@sheffieldcarers.org.uk www.sheffieldcarers.org.uk

Holidays and short breaks

Offers holidays at two caravans for families whose children have been diagnosed with cancer. Their caravan in Filey caters for children who are on treatment and unable to travel far, whereas the caravan in Berwickupon-Tweed is available for those off treatment.

This fund gives grants to help carers take a break from their caring role.

Grants may be used for a short holiday, to pay for some pampering at a spa or even for an item of equipment to help you with a break such as walking boots or a bicycle.

27

Welfare and legal advice

Service name

Service provider Phone contact

Location

Free Legal Advice

Weston Park Cancer Support Centre

0114 226 5666

Weston Park Cancer Support Centre, 23 Northumberland Road, Sheffield S10 2TX

Macmillan Benefits Advice

Nenna Kind Cancer Support Drop In Centre

01709 823645

Nenna Kind Cancer Support Drop in Centre, Dent’s Chambers, New Square, Chesterfield S40 1AH

Rotherham Macmillan Benefits Advice Service

Rotherham Metropolitan Borough Council

01709 823645

Rotherham Metropolitan Borough Council, Advocacy and Appeals Service, Riverside House, Main Street, Rotherham S60 1AE

Welfare Advice Service

Weston Park Cancer Support Centre

0114 226 5666

Weston Park Cancer Support Centre, 23 Northumberland Road, Sheffield S10 2TX

28

Welfare and legal advice

You may be entitled to a range of benefits which can make things easier for you. But navigating the welfare system can be a huge challenge, and sometimes you need someone who can guide you through the maze of help that is available. These services may also be able to advise on things like getting a blue badge, your rights at work and other legal issues such as wills and power of attorney.

Email and web address

Brief description

info@cancersupportcentre.co.uk

Up to one hour’s free legal advice is available from a Solicitor to help you understand the issues around Wills and Lasting Power of Attorney.

www.cancersupportcentre.co.uk

nenna.kind@btinternet.com www.chesterfieldcancerdropin.org.uk

macmillanwelfarerights @rotherham.gov.uk www.rotherham.gov.uk/info/200008/ benefits_and_support/736/benefit_ advice_for_people_living_with_cancer

info@cancersupportcentre.co.uk www.cancersupportcentre.co.uk

Welfare and legal advice

Free benefits advice is available from a Macmillan advisor. Call the centre beforehand to make an appointment.

The service offers people in Rotherham with a life threatening illness free advice about benefit entitlements.

The service is available at their offices, in patients homes, over the telephone and at Rotherham Hospital. Call or email to make an appointment.

Experienced welfare advisors are available, by appointment, to help with benefit, housing, debt or employment issues.

29

Transport services

Service name

Service provider

Phone contact

Location

Concessionary Travel Pass

Nottinghamshire County Council

0300 500 8080

Nottinghamshire County Council, Transport and Travel Services, Trent Bridge House, Fox Road, West Bridgford, Nottingham NG2 6BJ

ENCTS – Disabled Person’s Pass

Travel South Yorkshire

01709 515151

Travel South Yorkshire Information Centre, Sheffield Interchange, Pond Hill, Sheffield S1 2BD

Gold Card

Derbyshire County Council

01629 536741

For queries about applying for a Gold Card, contact your local district or borough council

30

Transport services

Getting around if you have a brain tumour can be hard. But it’s something you need to do. Whether it’s for treatment at hospital, or to carry on living your life to the full, you will need to travel. But many affected by a brain tumour are unable to drive, and taxis and public transport can be expensive and confusing. Don’t worry – you are not alone here, and there’s quite a lot out there to get you on your way.

Email and web address

Brief description

enquiries@nottscc.gov.uk

Free travel passes are available for people with certain forms of disability. The national concessionary travel pass offers free off-peak travel on local buses anywhere in England.

Free or half fare travel is also available on the Nottingham tram (NET).

www.nottinghamshire.gov.uk/ travelling/travel/buses/ concessionarytravel

traveline@sypte.co.uk www.travelsouthyorkshire.com/ disabled

goldcard@derbyshire.gov.uk www.derbyshire.gov.uk/ transport_roads/public_transport/ tickets_passes/concessionary_fares/ goldcard

Transport services

The English National Concession Travel Scheme (ENCTS) entitles disabled people to free off peak travel on buses across England. South Yorkshire Pass holders can also travel for free on local tram services.

Gold Card allows free, off-peak travel on local buses throughout the whole of England for people with certain disabilities. It also offers discounts at around 1,000 shops and other local businesses and access to community transport dial-a-bus services with a £1 flat-rate single fare (£2 return).

31

Service name

Service provider

Phone contact

Location

Hospital Bus Service (Chesterfield – Weston Park)

Nenna Kind Cancer Support Drop In Centre

01246 555514

Nenna Kind Cancer Support Drop in Centre, Dent’s Chambers, New Square, Chesterfield S40 1AH

32

Transport services

Email and web address

Brief description

nenna.kind@btinternet.com

This stress free hospital bus service runs direct from Chesterfield to Weston Park hospital. Pickups are twice daily from The Portland Hotel, West Bars at 10am and 2pm, returning from Weston Park at 1pm and 5pm.

Tickets are ÂŁ5 return and must be bought in advance from the Nenna Kind Centre or from patient accounts at Chesterfield Royal.

www.chesterfieldcancerdropin.org.uk

Transport services

33

Respite and end of life care

Service name

Service provider

Phone contact

Location

Helen’s Trust Support

Helen’s Trust

07780 331715

Helen’s Trust, Unit 2, Granby Road, Bakewell, Derbyshire DE45 1ES

Respite Breaks

Bluebell Wood Children’s Hospice

01909 517360

Bluebell Wood Children’s Hospice, Cramfit Road, North Anston, Sheffield S25 4AH

Rotherham Day Hospice

Rotherham Hospice

01709 308909

Rotherham Hospice, Broom Road, Rotherham S60 2SW

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Respite and end of life care

When you’re caring for someone full-time or for long periods, you need to have breaks otherwise you may start to feel stressed, resentful or even unwell. And believe it or not, the person you are looking after may want a break from you! Here are some organisations that could help you understand respite care, and they can also help you with planning for care towards the end of life, should you need to do this.

Email and web address

Brief description

referrals@helenstrust.org.uk

This Trust provides equipment and care to people with a terminal illness to help them stay at home with family and friends around them in the final stages of illness. It operates throughout North Derbyshire and The High Peak.

www.helenstrust.org.uk

info@bluebellwood.org www.bluebellwood.org

http://www.rotherhamhospice.org.uk/ patients-and-families/day-hospice

Respite and end of life care

It offers care and support to families who have a child or young person with a life limiting condition. Its respite care offers a chance for the whole family to spend some quality time together knowing that their child is in safe hands.

Day care is available at the hospice between 10am and 3pm Monday to Friday. The hospice can help with managing symptoms and provide a range of therapies in a relaxing environment. A chance to meet others in a similar situation whilst giving the family the opportunity to relax for a few hours.

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Bereavement support

Service name

Service provider

Phone contact

Location

Bereavement Coffee Morning

Parent’s Association of Children with Tumours and Leukaemia

0114 272 4570

PACT Office, Sheffield Children’s Hospital, Western Bank, Sheffield S10 2TH

Bereavement Course

Weston Park Cancer Support Centre

0114 226 5666

Weston Park Cancer Support Centre, 23 Northumberland Road, Sheffield S10 2TX

Bereavement Group

Cavendish Cancer Care

0114 278 4600

The Cavendish Centre, 27 Wilkinson Street, Sheffield S10 2GB

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Bereavement support

Unfortunately not everyone survives having a brain tumour. When a person you look after dies, you may be not only losing a loved one, but as a carer you may be losing your sense of purpose when your caring role ends. It may not feel like it, but there are many people to whom you can turn for help and support, including health and social services professionals who are becoming more aware of the impact bereavement can have.

Bereavement care and support is available to carers, family and close friends from a variety of organisations. Family members and friends can also provide emotional support.

Email and web address

Brief description

pact@sch.nhs.uk

This monthly coffee morning is open to parents and carers who have lost a child to a tumour and is held at the PACT House on Western Bank. Contact the office for further details.

www.pactfriends.co.uk

info@cancersupportcentre.co.uk www.cancersupportcentre.co.uk

enquiries@cavcare.org.uk www.cavcare.org.uk

Bereavement support

A six week course lead by a healthcare professional that offers practical and emotional support to to anyone that has lost a loved one to cancer. Support is also available on a one-to-one basis.

This group operates in blocks of six sessions and offers a chance to talk and share your thoughts and feelings with others in a similar situation.

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What can brainstrust do to help?

Help available At times it may feel like it, but you are not alone. Everyone in the brainstrust community has experience of what it is like to be diagnosed and to live with a brain tumour. We can help you to feel less isolated – we understand. Below are examples of the help available to you from brainstrust. Don’t hesitate to get in touch and talk to people who have been where you are now. We’ll help you get back on top of things.

What can brainstrust do to help?

For more information about any of these resources, visit www.brainstrust.org.uk, contact hello@brainstrust.org.uk or call 01983 292 405.

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What can brainstrust do to help?

Resources to keep you informed Information Standard certified information

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on our website www.brainstrust.org.uk. Clear, accurate, balanced, evidence-based and up-to-date information, certified by the Information Standard.

24/7 help line

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We know that you don’t just need to talk to someone 9-5.

We’ve been there. We know the fears and the need to talk to someone who understands at all hours. That’s why you can call us anytime. Open 24 hours a day, 7 days a week, the brainstrust help line offers brain tumour patients and carers support, information and pragmatic advice over the phone and by email. Call 01983 292405 or email hello@brainstrust.org.uk

Help you to understand the implications of the diagnosis

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A brain tumour diagnosis can be very scary, and it is difficult to identify what you need and want to know. We can chat through the impact with you, to help put you back in control.

Interpretation of medical records

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Medical jargon and terminology may be used in the records.

If you choose to look at your records (and you are entitled to) you may need help understanding them, so interpretation can be provided.

Contact brainstrust on hello@brainstrust.org.uk or call 01983 292405.

Help you seek a second opinion

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We are mindful that everyone reacts to a serious diagnosis in different ways. It is your right to seek further opinions, and this will empower some people. Some people would prefer not to exercise this right. Some people prefer to know as little as possible about their diagnosis; some people like to relinquish control of their situation to others. All of these are perfectly normal and acceptable ways of coping. And seeking second, even third opinions can cause confusion and stress. But they can inform, and help with decision-making. They can also be reassuring. We can only talk

What can brainstrust do to help?

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from our experience. We believe that you need to be informed to make decisions. And that might mean gathering information and then deciding not to make a decision. That’s a decision too! For more information on second opinions, visit ‘Just been told?’ on www.brainstrust.org.uk/advicesymptoms.php

Clear signposting

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brainstrust can point you towards valuable resources to help navigate your journey.

www.braintumourhub.org.uk

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Created for brain tumour patients and carers, the brain tumour hub is an authoritative, easy to navigate database of brain tumour support resources and UK based brain tumour clinical trials. It is intuitive, easy to use, developed with clinicians, patients and carers, and constantly evolving with regular updates.

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What can brainstrust do to help?

Resources to help you feel more in control Coaching

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At brainstrust we listen, listen some more and then ask questions.

We focus on achieving specific immediate goals, which relate to specific areas. For example, weighing up the pros and cons of having a particular treatment, or overcoming a problem with caring. We also know that through coaching, clients can experience a sense of healing, as they make courageous decisions about their lives and work. Coaching focuses on the future and the development of a workable solution. It’s about developing strategies and clarity to achieve a better quality of life.

Counselling

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When there is too much distress and a psychological intervention is needed counselling can be useful. It is suitable for someone who is struggling to cope or feeling very anxious and depressed and therefore finding it hard to focus on specific immediate goals. Counselling has a broader focus and greater depth than coaching and so is usually a slower-paced intervention. It is concerned with the individual and their relationship to self, as well as with their family and communities. It is less solution focused than coaching (sometimes there is no solution to the problem) and instead aims to help the individual make sense of the situation in which they find themselves in order to make better decisions about what they want and need for the future. In some situations formal counselling may not be appropriate and instead a supportive listening relationship might be more useful.

Hypnotherapy

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There is plenty of evidence that hypnotherapy helps people with cancer and those who care for them. Hypnotherapy can be used as a complementary therapy alongside conventional medical treatments and for a number of different purposes. Hypnotherapy can help brain tumour patients and carers to: manage anxiety, reduce stress, create a different experience of pain, build confidence and optimism, prepare for surgery and promote post-operative healing, reduce side effects of treatments, e.g. nausea and fatigue, optimise a healthy lifestyle to build resilience.

What can brainstrust do to help?

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Practical resources you can pick up Brain box

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www.brainstrust.org.uk/advice-resources.php#2 The brainstrust brain box – the ‘must have’ support toolkit for people with a brain tumour diagnosis and their carers. We appreciate how difficult things can be once you are diagnosed with a brain tumour; the ‘4.00am moments’, the travelling to and from appointments, the stream of questions that pop into your head, trying to remember the jobs of all the people that you’ll meet on your journey, and knowing who to turn to and when. A juggling act that you don’t need when you just want to focus your energy on feeling better. So to assist brain tumour patients, we provide this unique invaluable aid.

Little White Book

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www.brainstrust.org.uk/advice-resources.php#5 A comprehensive, easy to navigate compendium of UK brain tumour support resources.

the little

white book A compendium support resourceof brain tumour s

Edition 1: Septe

mber 2011

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What can brainstrust do to help?

Snaggle Tooth Splat

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www.brainstrust.org.uk/advice-resources.php#7 Written for brainstrust to help parent carers or patients broach a brain tumour diagnosis with their children. It is a beautifully illustrated book and has featured in the BMA newsletter and Oncology news. The forward has been written by the lovely actress and brainstrust supporter, Julie Walters. If you are a parent who has been diagnosed with a brain tumour, or are looking after a poorly little patient, then you can have a copy of this book, for free.

Written by Kare n Boswell Illustrations by Jason Mor time r

Who’s WHO in YOUR clinical team

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www.brainstrust.org.uk/advice-resources.php#6 Many patients find that they are left to manage their care pathway for themselves. brainstrust has developed this handy resource to help you navigate your journey.

It outlines all the healthcare professionals who may be involved in your journey and tells you what it is they do.

Who’s WHO in YOUR clinical team

Version 2.1: December 2013

HYLYW-2.1 version.in

dd 1 10/02/2014

What can brainstrust do to help?

15:43

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Resources to help you feel less lonely Meetup

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www.meetup.com/brainstrust At a brainstrust Meetup, members of the brain tumour community get together to have fun. No matter where you are on your journey or what role you have (such as carer, patient, health care professional) you can share experiences, and seek information from people who know what you’re going through. But only if you want to. Feel free to just come along and enjoy. Past Meetups have involved pizza and wine, pub grub, and cream teas.

facebook brainstrust brain tumour support group

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www.facebook.com/groups/braintumoursupportbrainstrust/ If you are on facebook, you can join this closed support group where a lot of very friendly patients and carers hang out. It is a really warm and welcoming group who will comfort you, answer questions, make you smile, and importantly are in the same boat as you.

facebook UK brain tumour carers group

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www.facebook.com/groups/ukbraintumourcarers/ This is a group page for carers of people with brain tumours in the UK. It can be very hard and lonely being a carer, so this group is for any carers to ask others questions about care, offer advice, have a general chat, a good laugh or rant/sound off when you need to without offending or upsetting those they look after.

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What can brainstrust do to help?

There are over 55,500 people living with a brain tumour in the UK. brainstrust is the charity and the community that’s here to help these people and those who look after them, whoever they are and no matter where they are on their journey.

We know we don’t have all the answers, but chances are we know someone who does. Get in touch today, for 24/7 help on 01983 292 405 or email hello@brainstrust.org.uk www.brainstrust.org.uk The little white book – Sheffield and the surrounding area, edition 1, published by brainstrust November 2014, due for review December 2015.