Information & Advice


Information & Advice

ASUK would like to assist you to be able to find the right support for you and your family, as we know from our experience how complex this can often be.  We’ve brought together helpful information, mainly from online resources that we think you will find useful. We’ve grouped these into topics to make it easy for you to quickly find the resources you need.

If you would like advice on a specific topic which isn’t included please let us know so we can develop our resources further. 

Don’t forget our family support team are here to assist you in any way we can, so please get in touch. All contact details and team information can be found on the ‘Meet the Team’ page HERE 

If you have any further questions please contact catherine.lewis@alstrom.org.uk / 07970 071 675

 

Please find below information and website links to further organisations who can give specific advice and guidance regarding some of the specific areas which can affect those who have been diagnosed with Alstrom Syndrome.

Don’t forget that your Family Support Worker can also advise, get you in touch with the right people and make contact with the Alstrom Syndrome specialists in Birmingham if you have any specific questions relating to Alstrom.

If you have an immediate health concerns please visit your GP or Consultant in your local area and for all emergencies your first point of call should be your local A&E department or to call 999.

All about the eyes

The eyes are often the first indication that you may be affected by Alstrom Syndrome.
Children who are affected may have an involuntary rapid movement of the eyes, which is referred to as Nystagmus or wobbly eyes and extreme photophobia which is a extreme sensitivity to light.

Eyesight can often deteriorate during childhood but the progression of vision loss is different from person to person. Often dark glasses are used both indoors and outdoors to combat photophobia. We support the need to teach IT and Braille at an early age as possible.

Some of the organisations below provide further information and advice:

NHS

The National Health Service (NHS) provide information about vision loss and organisations which give you information and support.

Nystagmus Network

A UK charity offering support and information for people affected by nystagmus (wobbly eyes).

SeeAbility

Are a charity who provide specialist support, accommodation and eye care help for people with learning disabilities, autism and sight loss. They also provide useful eye care fact sheets.

RNIB

The Royal National Institute for the Blind (RNIB) charity offer a wide range of services and information relating to sight loss, including an online community and help-line.

RSBC

The Royal Society for Blind Children charity provide a range of services in London and across England and Wales for blind and partially sighted children and young people, their families, and the professionals who work alongside them.

Sense

The charity sense offer a wide range of services for those who are affected by both vision and hearing loss. Including information, support, family events and sense colleges and day centres.

Visualise

Visualise work with organisations to increase awareness of the accessibility challenges faced by employees and/or customers with disabilities. Founder, Daniel Williams, who has an eye condition called Retinitis Pigmentosa which causes gradual sight loss, established the business in 2014 in order to share his knowledge, skills, experience and expertise in this field. Click HERE for the Visualise resource pack designed to help people facing sight loss – it provides lots of useful information about support services and suppliers of assistive technology and equipment.

All about hearing

Hearing loss can occur for people affected by Alstrom. This varies greatly from person to person and should be checked regularly. Hearing aids can help considerably and a small number of adults have been treated successfully with cochlear implants.

Action on Hearing Loss

The charity support people across the UK to manage their deafness, tinnitus and hearing loss. Providing information and community-based care and support services and campaigning for equality. They also offer comprehensive factsheets about cochlear implants and how to get hearing aids and how to adjust them, click HERE to view these.

BID Services

Are a charity who offer support for children, young people and adults and their families and carers, who are deaf, hard of hearing, visually impaired or have a dual sensory loss. Their services include advocacy, employment and housing advice and specialist equipment advice and mobility training.

All about dual-sensory loss

Deafblind UK

Offer support for people affected by dual sensory loss, both hearing and sight loss. they offer a comprehensive guide to both hearing and sight loss, getting the benefits you are entitled to and also provide a range of services such as activities and events.

Sense

The charity sense offer a wide range of services for those who are affected by both vision and hearing loss. Including information, support, family events and sense colleges and day centres.

All about the heart

Alstrom can cause the heart muscle to pump less efficiently. This is known as cardiomyopathy. This often occurs in infancy but the heart often recovers, although not completely, and can reoccur or present for the first time in later life. It is important for all people affected to have an annual cardiac review.

Cardiomyopathy UK
Offering information and support for people affected by Cardiomyopathy.
Please note that people with Alström Syndrome are much more likely than average to recover from this condition.

British Heart Foundation (BHF)

Offering advice and support regarding different types of heart conditions, including healthy recipes to try.

All about Diabetes

Insulin resistance is often present from infancy, but progression to type 2 diabetes is influenced by lifestyle. This can be impacted by increase in appetite, gaining weight more rapidly and restrictions around exercise due to dual-sensory loss. A healthy lifestyle including a healthy diet and exercise is very important in the overall management of Alstrom.

Diabetes UK

Offering support and information to people affected by Diabetes including useful resources such as living a healthy lifestyle, recipes and research developments.

All about our wellbeing and mental health

Preparing for Adulthood
Providing resources and information for young people who are affected by disabilities as they move into adulthood. They offer specific expertise and support with paid employment, good health, independent living options and friends, relationships and community inclusion.

Counselling Directory

The Counselling Directory enables you to find a suitable counsellor, and they are dedicated to making the process as simple as possible, providing individuals in need with all of the information they require to make the most well informed decisions.Counselling Directory aims to be the leading service for providing counselling advice and information – connecting those in distress with the largest support network in the UK. They understand how important it is to find the right counsellor, the one that is exactly suited to your individual situation, have a look on their website for further information of the counselling services available in your local area, as a general rule counsellors with more experience will be accredited with the BACP.

There are many charities who offer support, advice and information to support our mental wellbeing some of these charities are:

Mind

Mind offer support and information including useful guides on support and services available, you can view these here.

Young Minds

The charity Young Minds offer support and information for young people experiencing mental health challenges and their parents. They offer guides around support which can be found here as well as a beginner’s guide to the NHS’s Child and Adolescent Mental Health Services (CAMHS) for young people and parents, this guide can be viewed here.

What are you entitled to?

ASUK have brought together some useful ‘Hints and Tips’ around the Care Act and how to receive a specialist assessment which should take into account your daily support needs. This can be downloaded here

Implementing the Care Act – The charity Sense also provide guidance on Deafblind assessments. Click here to read about how you can request and evidence your requirement for a specialist deafblind assessment.

Direct Payments and Personal Budgets

A direct payment is one of the ways you can receive money from your local council to help you pay for your support needs. Choosing to have a direct payment gives you more control over the services you use and who provides these.

Each local authority will have their own guidelines around Direct Payments, but we have gathered some general advice to follow:

The charity Sense offers a comprehensive guide around how to pay for your support:
https://www.sense.org.uk/get-support/information-and-advice/paying-for-your-support/direct-payments/

Carers UK, provide an easy-to-read guide including what you can and can’t use Direct Payments for:
https://www.carersuk.org/help-and-advice/practical-support/getting-care-and-support/direct-payments

Age UK provide detailed factsheets about Direct Payments and Personal Budgets:
https://www.ageuk.org.uk/globalassets/age-uk/documents/factsheets/fs24_personal_budgets_and_direct_payments_in_social_care_fcs.pdf

The NHS provide useful information about Personal Budgets and Direct Payments:
https://www.nhs.uk/conditions/social-care-and-support-guide/money-work-and-benefits/personal-budgets/

Carers Assessment

Generally when a person asks to be assessed for direct payments, a carers assessment will also be needed.

Carers UK offer practical support and information about these assessments:
https://www.carersuk.org/help-and-advice/practical-support/getting-care-and-support/direct-payments 

Care and Support for Deafblind Children and Adults – DoH Policy Guidance

Useful information issued by the Department of Health, it provides policy guidance in relation to the Care Act 2014. To read the document in full click here.
You have the right to ask for a Specialist Deafblind Care Assessment from social care if you have sight and hearing loss of any level. You do not need to be profoundly deaf or blind for this request to apply to your own circumstances.

Blue Badge; Disabled Parking Permits

The charity, Contact for families with disabled children offer comprehensive information about the blue badge scheme and how to apply. This is usually done through your local authority.
A blue badge costs up to £10 in England and £20 in Scotland, it is free for people residing in Wales. They usually last 3 years before you need to reapply.
New rules will come into force from the 30th August 2019 which will take into account hidden disabilities as well as many people now being able to automatically qualify if they meet specific rules. You can read the full information here
The Government have also announced a new online system which means applicants can complete the whole process online, hopefully making it easier and quicker to apply.

To apply online you will need a photo or scan of your:

  • proof of identity (such as a birth certificate, passport or driving licence)
  • proof of address (such as a Council Tax bill or government letter)
  • proof of benefits (if you get any)

You will also need to provide a recent digital photo showing your head and shoulders.

You’ll also need to know:

  • your National Insurance number (if you have one)
  • the details of your current Blue Badge (if you’re reapplying)

You can find further information and apply online here

Challenging a decision 

The local authorities don’t always make the correct decisions, so just in case this happens we have provided some useful links about what to do next. But please don’t forget your ASUK Family Support Worker is here to help and support you through this process.

Your local authority should have a complaints process in place to resolve your complaint. If you feel your complaint hasn’t been resolved then your next step will be to make contact with the Social Care Ombudsman Service.

A useful link in challenging social care decisions around Adult Social Care can be found at CASCAIDr  which stands for the Centre for Adults’ Social Care – Advice, Information and Dispute Resolution
https://www.cascaidr.org.uk/

The Local Government and Social Care Ombudsman
This is a free service, which is often the final stage for complaints about councils, all adult social care providers (including care homes and home care agencies) and some other organisations providing local public services.
‘We investigate complaints in a fair and independent way – we do not take sides.’ (quote from the IGO website)
https://www.lgo.org.uk/

Please also refer to the resource section ‘All about Support from your Local Authority’ which will also give guidance about your rights and benefits.

What are you entitled to?

ASUK have brought together some useful ‘Hints and Tips’ around the Care Act and how to receive a specialist assessment which should take into account your daily support needs. This can be downloaded here

Implementing the Care Act – The charity Sense also provide guidance on Deafblind assessments. Click here to read about how you can request and evidence your requirement for a specialist deafblind assessment.

Care and Support for Deafblind Children and Adults – DoH Policy Guidance – Useful information issued by the Department of Health as it provides policy guidance in relation to the Care Act 2014. To read the document in full click here.

Blue Badge; Disabled Parking Permits
The charity, Contact for families with disabled children offer comprehensive information about the blue badge scheme and how to apply. This is usually done through your local authority.
New rules will come into force from the 30th August 2019 which will take into account hidden disabilities as well as many people now being able to automatically qualify if they meet specific rules. You can read the full information here
The Government have also announced a new online system which means applicants can complete the whole process online, hopefully making it easier and quicker to apply. You can find further information and apply online here

Working Families
Supports working parents and carers and their employers find a better balance between responsibilities at home and work. They offer a legal help-line to give parents and carers advice on employment rights, benefits and entitlements.

They also offer resources for parents of children who are affected by disabilities including knowing your rights, choosing childcare, entitlements and information about the ‘Waving not Drowning Network’ project. This project provides a helpline, newsletter, e-bulletin and occasional events and publications for parents of disabled children and carers of adults who want to combine paid work with their caring responsibilities.
You can find out more about these resources here

Renaissance Legal

Renaissance Legal specialise in working with families and carers of disabled and vulnerable individuals, helping them plan effectively for the future.

Office for Disability Issues (ODI)

Part of the Government Department for Work & Pensions. The ODI supports the development of policies to remove inequality between disabled and non-disabled people. Read the latest policy paper on disabled people’s rights following the UK’s first periodic review here: Disabled people’s rights: info following the UK’s 1st periodic review

Local Government and Social Care Ombudsman Service 
This is a free service, which is often the final stage for complaints about councils, all adult social care providers (including care homes and home care agencies) and some other organisations providing local public services.
‘We investigate complaints in a fair and independent way – we do not take sides.’ (quote from the IGO website)

Information and services should be in a format which is accessible for you and your needs.

The RNIB have useful resources on their website on many topics including accessibility. Click on the link HERE to find out more about accessible information, your rights, TV accessibility and talking ATM’s.

RNIB also offer a reading service called ‘Talking Books’This is a free service and the RNIB Library website offers all these reading services in one place.  This includes Audio, Braille, Giant Print, Music – there is so much to access, borrow and enjoy. They also have a library helpline you can call on 0303 123 9999.

Living Paintings design, create and publish tactile and audio books for blind and partially sighted people.  They call these Touch to See books. They publish titles suitable for anyone from pre-school to adult. The range is designed to provide education and life-long learning, enhance lifestyle and support leisure interests.

Educational Health Care Plans (EHCP)

IPSEA (Independent Parental Special Education Advice)
IPSEA is a registered charity offering free and independent legally based information, advice and support to help get the right education for children and young people with all kinds of special educational needs and disabilities (SEND). They also provide training on the SEND legal framework to parents and carers, professionals and other organisations. They have some useful sample letters and information for families and professionals alike.

Noddy Guide by David Wolfe– relates to different aspects of EHCP

SOS!SEN The Independent Helpline for Special Education Needs. Offer a free, friendly, independent and confidential telephone helpline for parents and others looking for information and advice on Special Educational Needs (SEN).

Council for Disabled Children – A guide to what an EHCP should contain can be found here

The School Run – A website for primary-school parents who want to help their children with their education and make sure they stay healthy, have fun and get the best possible start in life.

EHCP Journeys – This site provides real-life examples of what it is like to go through the EHC process from the perspective of children, families and young people who are going, or have gone, through it. It also discusses ways for services to get feedback on their local delivery.

Contact are a charity for families with disabled children who provide support, guidance and information.

Please find below resources and useful organisations who offer a range of activities. Please see the links below to find further information and please get in touch if you have any suggestions you would like to add:

British Blind Sport
The aim of this charity is to ensure people who are blind or visually impaired have opportunities to enjoy sport and recreational activities in the UK. They have recently launched ‘Find a Guide Database’ where anyone over the age of 18 can look for guide runners in their area. The guides are fully trained and DBS checked.

Victa
Provide support for children, young people and their families. They offer fun family activities throughout the year. You can view the 2017 list of activities here and the 2018 calendar of activities can be viewed here

The Outlook Trust
Provide adventure sports, activity week-end breaks and holidays for children who are blind or visually impaired.

RNIB
RNIB offer a range of activities and family events to get involved in. Including Actionnaires Clubs for 4 – 16 year olds. The clubs are provided throughout the UK and offer a range of activities including music, drumming, ten pin bowling, art,dance. swimming, athletics, basketball, goalball, judo, skiing, climbing, pizza making and attraction visits.

The Calvert Trust
Providing three activity centres two in the North and one in the South of England where anyone affected by a disability can explore a range of accessible adventure activities. ASUK have used the Calvert Trust centres a number of times and we have always been very impressed with the range of activities, accessible accommodation and welcoming staff, who believe it is what you can do that counts!

Climbing Out
Climbing out is based in the Lake District and offer fully funded activity breaks

Over the Wall
Providing fully funded activity breaks for disabled children.

The Bendrigg Trust
Offering a residential activity centre for people, of any age or ability in Cumbria.

ACUK Centres
Offering 5 venues across the Midlands, offering accessible accommodation and activities for all abilities.

Aerobility
Aerobility enables disabled and profoundly ill adults and children to share the magic which flying light aircraft brings – rediscovering smiles with the awakening experience of flight.

Having a complex condition can sometimes make living independently and traveling a challenge but with the right support and planning this can be overcome. In this section we have brought together useful resources to support you to stay independent.

Many local authorities have their own specific information about independent living services in your local area. This is often a good place to start if you would like to know what services are available locally for you.

Please feel free to contact your Family Support worker who will also be able to offer support and guidance.

All about Independent Living

Disability Rights UK offer a range of factsheets about independent living. These can be viewed here.

 Guide Dogs for the Blind provide guide dogs which have been trained to help people affected by visual impairments to live independently. Guide dogs can benefit both children and adults, by increasing confidence, self-esteem, independence and mobility. Guide Dogs for the Blind also offer a range of services such as family events, family grants, mobility training, education and family support and offer a sighted guide service for adults. They also offer CustomEye books which can be produced specifically to suit your child or young person.

All about Rail Travel

National Rail offer assistance to enable passengers with disabilities to travel. You can book to get help at any station for any train journey.

The train company can organise for someone to:

• meet you at the entrance or meeting point and accompany you to your train
• provide a ramp on and off your train if you need one
• meet you from your train and take you to your next train or the exit
• carry your bag (up to three items of luggage as per the National Conditions of Travel)

You can book help at short notice, but some companies may ask for up to 24 hours’ notice. You only need to contact one train company and they will organise assistance for your whole journey. You can book assistance by phone or online with the company directly or centrally via the links and numbers below:

• disabledpersons-railcard.co.uk/travel-assistance/
• 0800 022 3720
• 0845 60 50 600 textphone/minicom

You won’t have to pay extra if you can’t buy your ticket before getting on the train due to your disability.

Disabled Rail Card and Discounts

You can get a 1/3 off with a Disabled Persons Railcard for travel on the National Rail network in Great Britain. If there is another adult travelling with you, they can also get 1/3 off their rail fare. You can use your rail card to get discounts any time of day and costs £20 per year. Further information can be found here

If you don’t have a disabled rail card but are blind or visually impaired and need to travel with another person, you can get the following discounts:

  • First Class or Standard – Anytime Single or Return – 34%
  • First Class or Standard – Anytime Day Single – 34%
  • First Class or Standard – Anytime Day Return – 50%

These discounts won’t apply if you travel on your own.

Season Tickets for blind or visually impaired people

If you are blind or visually impaired, you can buy one adult Season ticket that enables a companion to travel with you on National Rail services only at no extra cost. It doesn’t have to be the same person travelling with you on every journey.

You will need evidence of your visual impairment such as a document from a recognised institution such as Social Services, your Local Authority, The Royal National Institute for the Blind (RNIB) or St Dunstans when buying your ticket and making your journey.

These tickets can be bought from staffed National Rail station ticket offices.

Further information about these services can be found here

All about Bus and Underground Travel

If you are affected by a disability you can apply for a Freedom Pass which allows free travel across London on bus and underground and free bus journeys nationally. You can find more information, including eligibility and how to apply HERE

You will need to contact your local authority to check who issues bus passes for those who have disabilities. If you are eligible you will receive a bus pass for free travel anywhere in England.

Passes from councils in England can be used anywhere in England:

  • at any time on a Saturday, Sunday or bank holiday
  • from 9:30am to 11pm on any other day

All about Motors

The charity, Contact for Families with Disabled Children offer comprehensive information about the blue badge scheme and how to apply. This is usually done through your local authority.
A blue badge costs up to £10 in England and £20 in Scotland, it is free for people residing in Wales. They usually last 3 years before you need to reapply.
New rules will come into force from the 30th August 2019 which will take into account hidden disabilities as well as many people now being able to automatically qualify if they meet specific rules. You can read the full information here
The Government have also announced a new online system which means applicants can complete the whole process online, hopefully making it easier and quicker to apply.

To apply online you will need a photo or scan of your:

  • proof of identity (such as a birth certificate, passport or driving licence)
  • proof of address (such as a Council Tax bill or government letter)
  • proof of benefits (if you get any)

You will also need to provide a recent digital photo showing your head and shoulders.

You’ll also need to know:

  • your National Insurance number (if you have one)
  • the details of your current Blue Badge (if you’re reapplying)

You can find further information and apply online here

Motability
The Motability Scheme enables people with disabilities to get mobile by exchanging their mobility allowance to lease a new car, scooter, powered wheelchair or Wheelchair Accessible Vehicle. You may be eligible to join the Scheme if you are in receipt of a higher rate mobility allowance.

All about Taxi’s

If you live in London and are affected by a severe mobility impairments or a severe sight loss, you can apply for a Taxicard which will enable reduced taxi fares. Full information about the taxicard can be found HERE

If you travel with an assistance dog they must be allowed into the taxi or minicab with you, unless the driver has an exemption certificate. This can be issued if they’ve got a medical condition made worse by contact with dogs.

A driver with an exemption certificate will have a yellow ‘Notice of Exemption’ notice on their vehicle windscreen.

It’s illegal to be charged extra to travel in a taxi or minicab with an assistance dog. Otherwise the driver could be fined up to £1,000.

The following types of dog can be taken with you in taxis or minicabs:

  • guide dogs trained by the Guide Dogs organisation
  • hearing dogs trained by Hearing Dogs
  • assistance dogs trained by Dogs for the Disabled, Support Dogs or Canine Partners

Jetting off, high in the skies

It is essential that you let your airline know at least 48 before you travel if you will need assistance. Airlines and airports have different facilities for disabled people. Find out from your airport or airline if they have the facilities you need, for example a toilet with disabled access.

If you have a sensory, physical or learning disability which affects your mobility when using transport, at airports in the UK and EU you have the right to:

  • help at specific arrival points, such as at terminal entrances, at transport interchanges and in car parks
  • help to reach check-in
  • help with registration at check-in
  • help with moving through the airport, including to toilets if you need it

You’ll also have the right to help because of your age or a temporary illness or injury – for example if you’ve broken your leg and it’s in a cast.

You can travel with up to 2 items of mobility equipment free of charge if you’re disabled. This will not count as part of your baggage allowance.

You cannot take your own wheelchair into the passenger cabin of a plane – it will be stored in the hold. Speak to your airline to find out what help they’ll provide when boarding.

You should tell your airline, travel agent or tour operator as soon as possible if you’re taking on a battery-powered wheelchair or mobility aid.

If you are travelling with a companion the airline you’re flying with will do their best to make sure you sit next to each other, so long as you tell them at least 48 hours before departure.

You have the right to travel with your assistance dog. Make sure you contact the airport to check the rules that apply.

Across the water

You can get help if you’re disabled and travelling on any of the following:

  • a cruise ship that’s leaving from a port within the UK
  • a ferry that’s leaving from or going to a port within the UK
  • a local ferry service, for example by river bus

If you need to make specific arrangements for your journey (for example if you have certain accommodation or seating requirements), you should tell the cruise line, ferry service, travel agent or tour operator at least 48 hours before departure. You should also let the cruise line or ferry service know if you need to travel with a carer. On a ferry, your carer might be able to travel for free.

 

Coping with loss and grief

Your first thoughts when you hear the words, loss and grief is the thought of the death of a loved one, which is often the most intense form of grief. But any loss can cause grief, the loss of your job, divorce, health or even the loss of your dreams and aspirations. Whatever your loss, it is personal to you and there are ways you can cope and in time move on with your life in a positive way.

The NHS provide information about seeking help with grief after a bereavement or loss.

Cruse bereavement support offer support, information and advice to all ages when someone dies.

The Good Grief Trust

The Good Grief Trust exists to help all those suffering grief in the UK. They aim to find the bereaved, acknowledge their grief and provide reassurance and a hand of friendship and ongoing support. Their vision is to bring all bereavement services together around the country, to ensure that everyone receives the support they need.

Child Bereavement UK supports families when a child sadly dies or is dying and when a child is facing bereavement.

Mind offers information and support for those bereaved, including blogs of personal stories.

Young Minds support young people and their parents to cope with grief, including information on ways to work through your grief and showing personal real stories of how people have come to terms with their grief and moved on positively.

Media Reviewed: June 2019
Next Review: June 2021