Rare Neurological Nursing Service - Bedfordshire

The Rare Neurological Nursing Service delivers care to patients within their own home/place of residence. This is a community-based specialist nursing service, for patients over the age of 18 years with a formal diagnosis of a Rare Neurological Condition.

The service focuses on proactive specialist assessment, monitoring, advice and support to both the patient and their carer and provides professional guidance, education and support to teams involved in the patient’s care.
Whilst the service will focus on the following conditions, other rare neurological conditions are not excluded.

Motor Neurone Disease (MND)
Huntington’s Disease (HD)
Progressive Supranuclear Palsy (PSP)
Multiple System Atrophy (MSA)

Lesser-known neurological conditions, such as Multiple Sclerosis, Alzheimer’s, Parkinson’s Disease and Functional Neurological Disorder are outside the scope of the service.

We can contact you in a range of settings:

Telephone contact
Clinic appointments
Home visits

Address

The Admin Block
Twinwoods Health Village
Bedford
MK416AT
United Kingdom

Opening hours

Monday – Friday 09:00am - 6:00pm

Telephone number

Single point of access 0345 602 4064

We are open to referrals from Healthcare professionals, for anyone aged 18 years or over and who has a confirmed diagnosis of a Rare Neurological condition and who is registered with a Bedfordshire GP

All referrals are to be made via the Single Point of Access 0345 602 4064.

Provide specialist nursing advice, support and education to patients/carers with rare neurological conditions
Information and support for people who have recently been diagnosed. We will work with patients and their carers to actively support them
Provide specialist support, advice and treatment at home or patients’ usual place of residence, community clinic or via telephone to avoid hospital admission.

Regular monitoring, assessment and intervention.
A continuous point of contact. Once registered, patients and their carers have open access to advice and support via the Single point of access.
Links with specialist services, charities and social care.
Working with other health professionals to provide a multidisciplinary approach to care.
Advanced care planning – helping people and their families talk through options and preferences for their future care.
Teaching for health and social care staff to improve their understanding of these conditions.
Act as a specialist liaison between acute and primary care teams, and actively navigate individuals and their carers through the health and social care system
Supporting professional and support teams
Supporting early discharges from the hospital when appropriate and actively reducing the length of stay
Working closely with care managers and palliative care teams to offer long-term management strategies to patients, carers and GPs
Offer mentorship and teaching to acute, community, Primary Health Care Teams and social care teams.
Work closely with Neurology departments and consultants as well as GP’s
Help and advice for the management of your physical symptoms, such as saliva management, breathlessness, cramps, fatigue or nausea.
Refer to other services that can help with the management of a patient’s condition, such as occupational therapy, physiotherapy, speech and language therapy, wheelchair clinic and more.
Advice and support when making decisions about specific interventions.
Signposting to services that can help to apply for benefits.
Liaison with charitable organisations, especially those pertinent to your illness

MND Association helpline: 0808 802 6262 (Mon-Fri 9-4pm)
Huntington's Disease Association: 01513 315 444 (Mon-Fri 9-5pm)
Multiple Systems Atrophy Trust: 0333 323 4591 (Mon-Fri 9-4pm)
PSP Association: 0300 0110 122 (Mon-Fri 9am-9pm)
Ataxia Association: 0800 995 6037 (Mon-Thurs 10.30am-2.30pm)
Palliative Care Hub: 01767 641349 (24/7- nurse-led telephone support service)

Anglia Mobility Ltd, Bedford: 01234 273 172 www.angliamobility.co.uk (Mon-Fri 9.30-5pm)
Disability Resource Centre, Dunstable: 01582 470900 www.drcbeds.org.uk (Mon- Thurs 9-5pm, Fri 9-1pm)
Carers in Bedfordshire: 0300 111 1919 www.carersinbeds.org.uk (Mon-Fri 9.30-4pm)
Papworth support line: Need a replacement mask/strap either email papworth.rsscparts@nhs.net or phone 01223 638 890 (leave a voicemail). If issue with NIV or mask no longer fitting ward direct number is 01223 638365 (24/7)
Central Beds Social Services: 0300 300 8303 (Mon-Fri 8.30-5.30pm)
Bedford Borough Social Services: 01234 276168 (Mon-Fri 9-5pm)