National Service Framework

On 28 February 2001 Secretary of State, Alan Milburn, said "Today I can announce that we will develop a new National Service Framework for Long Term Health Conditions. The NSF will have a particular focus on the needs of people with neurological disease and brain and spinal injury.

It will include services for people with epilepsy, Multiple Sclerosis, Parkinson's Disease and other similar conditions. The NSF will overcome the lottery in care and ensure health and social services work together in all parts of the country to provide the right level of care and treatment for people with long term health conditions."

The Department has just started scoping the NSF's extent and coverage, and we'll be talking about that to a wide range of interested parties including the voluntary sector, patient's organisations and the NHS. Once this process is completed, an external reference group will be set up, bringing together health and social care professionals and service users and carers. The current plan is that the NSF will be published in 2004 for implementation in 2005.

If you would like to find out more, please:

• follow the links to the Department of Health website pages for National Service Frameworks (NSFs):

• Or look at the summary pages below

Summary pages:

What are NSFs?

What's happened so far?

What's been said so far?

What about carers?

How can I have my say?

National Service Frameworks:

• set national standards and define service models for a defined service or care group;
• put in place strategies to support implementation; and
• establish performance milestones against which progress within an agreed time-scale will be measured.
  

Report of the Scoping Event, 12 November 2001

INTRODUCTION

1 The NSF project team organised a one-day facilitated workshop on 12 November. Its aim was to begin to identify the top ten key issues the NSF should address to improve the quality of life for people with neurological and other long-term conditions. This was done through a mixture of group and plenary work.

2. A wide cross-section of stakeholders attended, including representatives from the voluntary sector, health and social care professional, users, carers and officials from other government departments (see Annex 1).

3. The Department of Health Minister, Jacqui Smith, and Sarah Mullally, the Chief Nursing Officer who is the Departmental Director responsible for this NSF, addressed the meeting. A key theme of both their speeches was the importance of user and carer involvement in the development and implementation of the NSF. Another was the need for a genuinely open, inclusive and constructive consultation process that really listened to the views of stakeholders.

KEY THEMES, SOLUTIONS AND EARLY EFFECTIVE INTERVENTIONS

SERVICE USERS

Integrated health care and integrated health and social care

1. A key issue for service users was a need for more integration within the various levels and between the various parts of the NHS and also for better integration between health and social services, putting the user at the centre of decisions about their care.

The expert patient

2. Professionals needed to recognise users' skills and expertise in understanding and managing their condition and adopt the principles of the Expert Patient Report where suitable. These include the concepts of empowerment, choice, consent and dialogue. However, adopting these principles would not be possible or desirable in all cases and people not acting as expert patients needed protection within and access to high-quality services. In all cases, self-management should complement, not replace other services and there needed to be a continued sharing of responsibilities. Developing new and improving existing 24-hour community nursing service would help people remain at home.

Transition issues

3. Service users wanted a seamless service with continuity of care. The care needed be individual and flexible to cope with transition issues. These issues included:-

• from diagnosis to living in the community with a long term condition
• age-related issues as people moved from paediatric - adult - older persons' services;
• different patterns of illness e.g. relapsing/remitting, fluctuating, progressive and terminal;
• different service needs and care pathways: acute phases - rehabilitation - community and back again;
• different personal circumstances: e.g. from employment to unemployment; from independence to dependence; parenthood, and bereavement including death of a carer.

Single assessment procedures and key workers

5. An interdisciplinary approach:-

• single holistic needs assessment procedure based on quality of life looking at medical, psychological and social needs with different pathways for different phases of the condition e.g. : acute, stable, fluctuating and degenerative. Need for clinical guidelines and protocols to help with this;
• the right support mechanisms for service users and carers: case manager, voluntary organisations, specialist nurses, health and social care professionals with well-defined and understood roles and responsibilities; respite care and regular short breaks;
• comprehensive care plan before discharge;
• appointment of a key worker responsible for co-ordinating care (see para 14).

Access to services

7. Equitable access to a flexible range of appropriate services including: -

• transparent referral practices;
• early, accurate diagnosis with sensitive communication with service users and their carers;
• appropriate in-patient care including specialist services;
• appropriate out-patient care;
• specialised and community rehabilitation services e.g. physiotherapy, hydrotherapy and orthotics (and access to more than one episode of rehabilitation);
• psychological, neuro-psychological, psychiatric, counselling and psychosexual and relationship services;
• complex packages of home-care with professional advice and management of issues like gastric feeding and pain-management;
• palliative care (extend role of hospices to help those with chronic conditions rather than concentrating so much on people with terminal cancer).

Symptom management

7. Help with a range of common symptoms including:-

• incontinence;
• chronic pain management;
• fatigue;
• depression;
• cognitive problems.
• mobility problems and movement disorders;
• speech and language problems;
• spasticity;
• sensory problems.

Assistive devices and community equipment

8. Equitable access to good quality housing adaptations and assistive devices (community equipment) that are properly maintained to agreed minimum standards and securely financed e.g.:-

• orthotics;
• wheelchairs;
• communications aids;
• 24-hour postural management.

9. Improved community equipment services including:-

• transparency of decision-making process and needs-assessment;
• involve service users, carers and service providers on equal basis with possible input from the Health and Safety Executive;
• WHICH? Guide to encourage consumer choice;
• identified gatekeepers responsible for providing equipment e.g. an occupational therapist;
• fast database of assitive technology;
• register of equipment users with a review mechanism to see if equipment meets users' needs: outcome measures of service-user satisfaction;
• maintenance: companies to provide warranty under contract;
• develop consumer relationship with Medical Devices Agency;
• enable better use of Direct Payments for equipment;
• expand Patient Advocacy Liaison Service (PALS) to cover equipment, working with social services.
• Welfare, housing, work, transport and leisure

10. Equal access to:

• welfare/benefits and other financial advice;
• suitable housing
• employment and vocational training;
• transport and leisure services: outreach transport for geographically isolated.

Review and self-referral to specialist services

11. Mechanisms that allow:-

• regular invitations for case reviews from the statutory agencies for service-users, explaining the reason for the review and what help is available i.e. "the case does not close". These reviews could be used as a means of "secondary" prevention: preventing further unnecessary damage, slowing degeneration, prevention of infection and contractures caused by immobility or lack of maintenance treatments and therapies;
• an in-built review that user/patient can initiate;
• self-referral to specialist services e.g. physiotherapists to reduce delays to patients and primary care

12. The key issues were:-

• service users' needs should be assessed without assuming informal carer help;
• anticipatory, pro-active care and support for carers to prevent them "going under", particularly helping with the stains imposed on relationships by the long term illness;
• rapid responses to changes in carers' circumstances e.g. illness, unemployment, divorce or death;
• information about services;
• increased use of planned rather than acute respite care and regular short-term breaks so that care is shared. This may need an increase in respite beds in nursing homes and hospices.
• recognition of the needs of ageing carers and the heavy burden of care; need to increase skill and independence of users;
• recognition that many carers have long term conditions themselves