Long term conditions register

What is the long term conditions (LTC) register?

The LTC register is a secure database of information which enables the community neurological conditions management team to provide you with regular reviews of your condition.

What information do we keep on the register?

Personal details kept on the LTC register include:

• Name, date of birth, and address.
• Diagnosis.
• Whether your care is currently active/on the waiting list/on the review list
• Date of last contact or review, and type of review recommended (telephone, uni-disciplinary/ multidisciplinary).
• Planned review date (three, six or 12 months).

Why is it being offered?

Being on the register enables the team to offer you a regular review of how you are managing your condition and your daily activities and enables us to provide long term support and management as you need it.

Who is it for?

People living in Barnet, with a GP in one of the North Central London Boroughs (Barnet, Camden, Enfield, Haringey and Islington), who have a long-term neurological condition which may change over time, such as multiple sclerosis, motor neurone disease, Huntington’s disease, cerebral palsy, ataxia, etc, or people with a long-term neurological condition, who have a specific reason for why they require a review by the community team.

What does a review involve?

A team member will contact you to find out:

• How you are managing at home
• How your body is moving (physical activity) how you are thinking, remembering (cognitive behaviour)
• Your social activity, for example: getting out into the community, at work, social support, etc
• How regularly you need to have a review
• Where the best place is to see you.

This may be done over the telephone, virtually, at an out-patient clinic or at home.

A review management plan

This is provided at the end of each review or episode of intervention, which will detail your current problems, what we have done about them and when and where your next review will be. Your plan will be discussed with you and all the relevant health and social care professionals will be kept informed.

If you need any further treatment from one of the team (MS nurse, occupational therapist, physiotherapist, speech therapist, dietitian, or psychologist) you will be added as a new referral to the team and prioritised accordingly.

This may mean there will be a wait before you see the therapist for treatment.

The benefits

1. You will receive a regular review and plan for your long-term care.
2. You will have a case co-ordinating professional identified who will make sure that your review management plan is followed and will also be available to discuss any future needs that you identify.
3. You can self-refer to any member of the team (MS nurse, physiotherapy, occupational therapy, speech and language therapy, dietician, neuro psychology etc). See the self-referral guidelines below.

How do I get registered?

You will have been automatically added to the register, either when you were referred to the service and have a long term progressive neurological condition, or if there is a specific reason that the team feel would benefit from a planned review.

Sharing this information

This information is secure and will not be shared with anyone else unless it will benefit your care or long-term management. We aim to work closely with Barnet Social Services to share information and to reduce duplication and may suggest a joint health and social care review.

The team chairs a six-weekly meeting with health and social care professionals (Barnet multi-disciplinary team complex case forum). If appropriate we use this forum to discuss individuals we feel would benefit from a wider team discussion, to solve problems, or highlight concerns.

We also use this forum to update our colleagues about people who are involved with the team, who have motor neurone disease, and other complex conditions, or who are receiving palliative care.

What if there is someone I don’t want you to share information with?

If there is a specific health, social care, third sector*, professional, or organisation, that you do not wish us to share information with, please let a member of the team know via the contact details below.

*e.g., a hospice, Multiple Sclerosis Society, Motor Neurone Disease Association, Huntington’s Disease Association.

What if I don’t want to be on the register?

If you do not wish to be added to the register, please complete the attached form, and return to us. You can ask to be removed from the register at any time. Speak to your nurse or therapist, or contact the team on 020 3758 2465.

Self-referral to the community neurological conditions management team

When to self-refer?

When you are on the register or you are known to the team you can self-refer to the MS nurse, occupational therapists, physiotherapists, speech and language therapists and dietitians.

A self-referral is appropriate if:

• Your condition has got worse or changed significantly. For example, you are falling more frequently, you have increased weakness, or increased pain or less movement, your walking or ability to get on and off a chair/ toilet/ bed etc have got worse.
• You have had a relapse.
• You are not able to do some of the daily activities that you were able to do before (e.g., getting washed, cooking, childcare, going to work, remembering appointments).
• Your personal situation has changed resulting in a need for increased independence (e.g., moving out of home, moving to a new house, starting college or a new job).

Our service does not provide support if you:

• Are acutely unwell and need to see a doctor (contact your GP or neurology service).
• Have stopped doing your exercises and need some encouragement.
• Need some emotional support.
• Need to talk to your social worker (contact Barnet Social Care Direct on 020 8359 5000).
• Need an increase in your care package from social services (contact Barnet Social Care direct on 020 8359 5000).