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National Prion Clinic

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Sources of help for families and health professionals

Additional information, support and advice can be obtained from a variety of voluntary organisations as well as statutory bodies. It is possible that there is little or no experience in service provision for people with prion disease in your local area. It will be important for national organisations with experience of this condition to be involved supporting families and professionals in order to facilitate services locally which meet each family's individual needs.
Statutory organisations

All those with suspected prion disease are referred simultaneously to the National Prion Clinic (NPC) and the National CJD Research & Surveillance Unit (NCJDRSU) order to ensure families receive a prompt service and access to information about treatments at the earliest opportunity. Staff from the NPC and researchers from the NCJDRSU will arrange to visit you and your family either at home or in hospital. They will liaise with the doctors involved in your or your relatives care, and if any form of prion disease is felt to be likely or is confirmed, a plan for further management will be agreed with you.

National Prion Clinic

The National Prion Clinic at the National Hospital for Neurology and Neurosurgery is the national referral centre for people with suspected or confirmed prion disease. Assessment, diagnosis, information, advice and support are available for patients, families, and health care professionals, and we are happy to discuss any issues with families or professionals over the telephone, without the prior need for a referral.
In our role as the tertiary referral centre for prion disease in the UK, the neurologists, nurses and neuro psychologist offer clinical support and liase closely with local care teams and the Care Co-ordinator who administrates the National Care Package.

National Prion Clinic
Box 98
National Hospital for Neurology and Neurosurgery
Queen Square
London
WC1N 3BG

Tel: 020 7679 5142 / 020 7679 5036
Email: uclh.prion.help@nhs.net 

National Creutzfeldt-Jakob Disease Research & Surveillance Unit

The NCJDRSU is based in Edinburgh, and its role is to monitor all suspected cases of prion disease in order to develop an understanding of the factors potentially associated with the development of these diseases.

A Care Co-ordinator based at the CJD Resarch & Surveillance Unit in Edinburgh is also available to help facilitate the development of a care package that is flexible, can 'fast track services', and meets the individual needs of the family concerned. Department of Health funding to meet any shortfalls in provision due to a restriction in resources locally is administrated by the Care Co-ordinator. This funding is known as the National Care Package.

National Creutzfeldt-Jakob Disease Research & Surveillance Unit
Western General Hospital
Crewe Road
Edinburgh, EH4 2XU
Tel: 0131 537 1980/2128/3103
Website: www.cjd.ed.ac.uk

Growth Hormone related queries

The National Prion Clinic provides specific support for recipients of cadaveric human growth hormone. You can find out more about treatment with cadaveric human growth hormone here. 

Please contact:
Gargi Banerjee           gargi.banerjee@nhs.net
Kirsty McNiven           Kirsty.McNiven@nhs.net

You can also contact the National Prion Clinic on 020 7679 5142 or 020 7679 5036 and we will get back to you as soon as we can.

Voluntary organisations

CJD Support Network

The National CJD Support Network offers support, information and advice for people with any form of prion disease and their families. The CJD Support Network is the only UK charity providing emotional and practical support for all strains of CJD and for those who are at greater risk of CJD. www.cjdsupport.net/

The CJD Support Network
Associates House
118a East Barnett Road
New Barnett
EN4 8RE

Helpline tel: 0800 774 7317
Admin tel: 0800 774 7317
Email: support@cjdsupport.net

The Cure CJD Campaign

The Cure CJD Campaign Raising funds to support the work of the MRC Prion Unit at UCL

Local services - Statutory organisations

The following services in your own area may contribute to your care package. All services can be accessed via your GP, and some will take referrals directly from families. It is imperative that a case conference is arranged as soon as possible so that the needs and wishes of the individual and family can be established, a key worker appointed, and appropriate practical help put in place as quickly and sensitively as possible.

Social Services
Social services appoint a Care Manager who will arrange a case conference and identify a keyworker. Specifically social services will be able to advise on financial benefits, day care, respite care and long-term care. Many services for people with progressive neurological problems have been set up with older people in mind, but there are more and more specialist services being developed around the country.

DHSC document

General Practitioner
Your GP should help to coordinate services and advise on ongoing medical problems. In many cases it is the GP who will have the responsibility to refer the individual to relevant services.

Occupational Therapist and Physiotherapist
Occupational therapists are involved in assessing for adaptations and aids to facilitate mobility and independence in daily living. A physiotherapist is able to advise and provide exercises to maintain mobility and prevent secondary disability arising from the condition.

Speech and Language Therapist
Speech and Language Therapists offer advice about communication and swallowing.

Community Psychiatric Nurses (CPN)
CPN's provide advice on behavioural problems. Behavioural problems arise for a number of reasons (for example side effects of medication, disease progression, communication difficulty, and perceptual impairment) and various health professionals can be of assistance.

Admiral Nurses
Admiral nurses are available in some areas of the country. Their role is to support carers of people with a dementia.

District/Macmillan Nurses
Provide help and support for daily nursing needs.

Continence Advisors
Equipment and advice regarding the management of incontinence, in addition to a laundry service are also available in the community.

Local services - Voluntary organisations

Citizens Advice Bureau (CAB)
The CAB will be able to offer help and advice regarding financial and legal issues, for example Enduring Power of Attorney, and any benefit entitlement.

Crossroads
Different branches of Crossroads provide different services, but all are aimed at providing practical help for carers.

Your local Alzheimer's Society branch
Many branches have services specifically for younger people with progressive cognitive impairment, and may have outreach workers. They may well be an important resource for networking in your local area.

How to claim Benefits for individuals affected by CJD

If you’re at least 16 and under State Pension Age:

Personal Independence Payment (PIP)

The Special Rules allow people nearing the end of life to:

  • get faster, easier access to certain benefits
  • get higher payments for certain benefits
  • avoid a medical assessment

A claim applied under the special rules will be awarded for three years – the claim will be reviewed after this period. You can still apply for PIP if you're expected to live longer than 12 months, but you will not be able to apply under the special rules.

You can also apply for special rules for other benefits
https://www.mariecurie.org.uk/help/support/benefits-entitlements/benefits-social-care-system/special-rules

Daily living component for help with everyday activities:
Standard rate: £68.10 a week
Enhanced rate: £101.75 a week
Mobility component for help with getting around:
Standard rate: £26.90 a week
Enhanced rate: £71.00 a week

Adult Disability Payment

Replacing PIP in Scotland; helps with extra living costs if you have a disability or a long-term health condition that affects your everyday life. If you move from Scotland to England or Wales, and currently receiving ADP, you must make a new claim for PIP instead. 
 Adult Disability Payment - mygov.scot

Employment and Support Allowance

For those who are 16 years and older, under State Pension age, with disability or illness that makes it difficult or impossible to work.

You also need to have both :

  • worked as an employee or have been self-employed
  • paid enough National Insurance contributions, usually in the last 2 to 3 years - National Insurance credits also count.

ESA gives you:

  • Money to help with living costs if you’re unable to work
  • support to get back into work if you’re able to.

How much you get will depend on what stage your application is at, as well as things like your age and whether you’re able to get back into work. You could get Universal Credit at the same time or instead of New Style ESA.    

Universal Credit

A payment to help with your living costs. You may get it if you’re on a low income, out of work or cannot work. 
Universal Credit in NI -   Universal Credit | nidirect

If you receive Personal Independence Payment (PIP), Disability Living Allowance (DLA), or Attendance Allowance, these will not affect the amount of Universal Credit you get

To claim you must:

  • live in the UK
  • be aged 18 or over (there are some exceptions if you’re 16 to 17)
  • be under State Pension age
  • have £16,000 or less in money, savings and investments.  

How much you’ll get 

Monthly standard allowance 

If you’re single and under 25 

£292.11 

If you’re single and 25 or over 

£368.74 

If you live with your partner and you’re both under 25 

£458.51 (for you both) 

If you live with your partner and either of you are 25 or over 

£578.82 (for you both) 

If you’re above State Pension Age: 

Attendance Allowance – If you are your State Pension age or over and have a disability severe enough that you need someone to look after you, you are eligible to get this benefit. You are not being means-tested prior this allowance provision. You could get £68.10 or £101.75 a week to help with personal support.  

You could get extra Pension Credit, Housing Benefit, or Council Tax Reduction if you get Attendance Allowance.  

If you have a carer, claiming Attendance Allowance may help them qualify for benefits such as Carer’s Allowance. You and/or your carer may be entitled to other extra help too.

Attendance Allowance: Overview - GOV.UK (www.gov.uk)
You can apply for Attendence Allowance on behalf of someone else without their permission. For claims of Universal Credit and Employment and Support Allowance, only an appointee or a person who has power of attorney can make a third-party claim on the patient’s behalf. For claims to DLA, PIP and AA, any person representing the patient can make a third-party claim on their behalf, even if the patient is unaware that a claim is being made.

If you are caring for someone: 

1. Carer’s Allowance - You could get £76.75 a week if you care for someone at least 35 hours a week and they get certain benefits.
Carer's Allowance Supplement is an extra payment for people in Scotland who get Carer Support Payment or Carer's Allowance on a particular date. (https://www.mygov.scot/carers-allowance-supplement) 

2. Carer’s Credit - You could get Carer’s Credit if you’re caring for someone for at least 20 hours a week. Carer’s Credit is a National Insurance credit that helps with gaps in your National Insurance record. Your State Pension is based on your National Insurance record.  

3. Carer Premium and Carer Addition - The Carer Premium and Carer Addition are the same thing. The Carer Premium is an extra amount added to certain benefits if you're caring for someone. It's called the Carer Addition when it's added to Pension Credit.

Other possible financial support options:

1. CJD Support Network Care Grants
The CJD Support Network is an independent charity who offer Caring Grants of up to £500 to provide support where there is a financial need that cannot be otherwise covered by statutory funding. For more information, please contact the CJD Support Network (0800 774 7317, support@cjdsupport.co.uk) or visit www.cjdsupport.co.uk/care-grants

2. CJD Care Fund
The National CJD Care Fund is an allocated funding accessible to those with a confirmed diagnosis of CJD or associated prion disease. Awards are given to support timely access to specialist equipment and care interventions. Please speak with your nurse or contact the care fund team to discuss qualifying criteria.

Local council and government grants 

Holiday Grants:  The 3H Foundation Grants: offer holiday grants for people with a disability and holiday grants for carers (respite breaks). (https://www.the3hfoundation.org.uk/)
The Respite Association: provide free breaks for carers. (https://respiteassociation.org/)
The Ogilvie Charities: provides funding for holidays for carers. (https://www.ogilviecharities.org.uk/)    

National Prion Clinic
Box 98
National Hospital of Neurology and Neurosurgery Queen Square
London WC1N 3BG

MRC Prion Unit at UCL
Institute of Prion Diseases
The Courtauld Building
33 Cleveland Street
London W1W 7FF 
Helpline: 020 7679 5142 / 020 7679 5036

uclh.prion.help@nhs.net
uclh.prionadmin@nhs.net

The National CJD Nursing Service
Department of Clinical Neuroscience - RHCYP
Level 2 Clinical Offices
50 Little France Crescent
Edinburgh
EH16 4TJ
0131 312 0193
loth.cjdcarefund@nhs.scot
 

*The following information is extracted from Gov.uk and Marie Curie website, dated from April 2024. A review should take place every 6-12 months as a minimum standard to ensure our guidance posted follows the most up to date practice. Kindly notify us through our clinic helpline should you have any questions about this.  

Other useful links

Please see below for links to a number of organisations that may be of interest: