Health and Social Care Bill

Memorandum submitted by the United Kingdom Acquired Brain Injury Forum (HSR 19)

Response to Government Briefing

United Kingdom Acquired Brain Injury Forum: A forum representing professionals who work with people who have had an Acquired Brain Injury (ABI).

Every year over 100,000 people survive a brain injury. This group of patients come under neurological services but are different in many ways to other neurological conditions. Their brain injury is acquired and they continue to have a normal length of life (life expectancy). Rehabilitation following ABI therefore takes on a very important element of recovery and life long support needs.

We welcome the Government’s approach to difficulties within the Health and Social Care Bill. We believe the listening exercise has been productive and are pleased with many of the recommendations from the Future Forum.

The Future Forum acknowledged the concerns we raised during the listening exercise with the Neurological Alliance and National Voices, but we do not feel they have all been satisfactorily addressed. Specifically, services for the neurological conditions and of the people we represent with acquired brain injury.

We would like to work with the Department of Health and the Government to promote good decisions and appropriate solutions for the eight million adults living with neurological conditions in England, many of whom have an ABI and a normal life expectancy. We believe the following would better serve this group

A. Clinical senates and networks

1. Neurology should be represented on each clinical senate

If clinical senates are to provide guidance and leadership to clinical commissioning groups, this needs to include neurology. At present, there are no pathfinder consortia that have chosen to look at neurology as a special area of interest. This could be because of knowledge and skills gaps in what good quality neurological services should look like. To help clinical commissioning groups fill this gap, clinical senates must provide leadership in this area. The best way to do this would be to make sure that neurology specialists are represented in each clinical senate.

2. Neurological networks should be funded and embedded throughout the NHS

There are some excellent examples of neurological networks in England. However, these are patchy with some areas struggling to get off the ground. Without proper support, guidance and funding from the Department of Health/NHS this situation is likely to remain, or possibly even deteriorate.

One of the best examples of a neurology network is in the North East. This network was funded and fully supported. It worked with service users, carers, clinicians and social care to help develop a more integrated service – exactly the model that the Government support. It was the only funded neurological network in the country. However, as is often the case with neurology which seems low on many priority lists, this network is at risk because of changes to the NHS. Because of changes in staff and structures, as well as decreased funding, this network is now working with the cardio-vascular network to try and survive the transition process.

The Government/Department of Health should follow the recommendation of the Future Forum and look at the most effective forms of networks and spread best practice [1]

The Government/Department of Health should provide support for existing networks to help them through the transition process

We are pleased to see the Government recognise the importance of networks and clinical senates. We look forward to confirmation that these will cover the eight million people across England living with neurological conditions.

B. Commissioning for less common conditions

1. The Future Forum reflects the concerns we raised about the future of commissioning for less common conditions [2] . However, we do not believe that the Government’s response addresses these.

2. The Health and Social Care Bill must address the ‘strategic gap’ [3] in commissioning less common conditions.

3. The authorisation process of clinical commissioning groups must include assessment of how they will collaborate to commission less common conditions

4. Clinical commissioning groups must have a duty to work collaboratively to commission for less common conditions

5. The NHS Commissioning Board must monitor, and where necessary enforce, commissioning of less common conditions.

6. To help support this, there should be an advisory group for neurology within the NHS Commissioning Board – in line with the Future Forum recommendation. [4]

7. Pathfinder consortia have big differences in the population sizes they cover and some of them cover a relatively small population size. If this is the case with clinical commissioning groups we do not believe that smaller groups will be able to commission neurology services effectively.

8. People with neurological conditions need an integrated neurology multi-disciplinary team. This should include a range of clinicians and specialists, for example physiotherapists, specialist nurses, consultants and occupational therapists.

9. For these to be cost-effective they need to be commissioned for a population size of at least 250,000 and preferably even greater. (As was identified in DoH Commissioning for specialised services). Clinical commissioning groups covering a smaller population and working in isolation are unlikely to deliver the services that people with neurological conditions need.

10. As we previously stated, no pathfinder consortia are looking at neurology as a special area of interest.

11. Many neurological conditions do not have a NICE guidelines, specifically, none that follow the patient into the Community for long term condition support and re-access to Acute care. It is therefore extremely unlikely that an audit or system to monitor quality or standards of practice can be completed to assess for provision of services. Motor neurone disease, which was the example quoted by the Future Forum when it raised the difficulties of commissioning for less common conditions, falls into this category. So do many other neurological conditions.

12. Without explicit statutory protection that complements the identified DoH Commissioning of specialised services and better metrics papers to ensure there is a method to monitor the commissioning of Acute and Community services for less common conditions, neurology services will fall through this ‘strategic gap’.

13. To support these changes we recommend that a neurology advisory group is a part of the NHS Commissioning Board.

14. The Future Forum recommended that ‘further consideration should also be given to leadership for less common conditions’. We are sure that the Government would recognise the importance of neurology when considering less common conditions such as ABI. We are able to help the Department of Health introduce this.

15. We believe it is essential that the commissioning services for less common conditions forms part of the authorisation process for clinical commissioning groups. This will make sure that the importance of collaborative working is recognised from the outset.

About UKABIF

UKABIF works actively with the Neurological Alliance and National Voices. In addition to representing our membership of NHS and independent care providers, ABI survivors and their families and health care and legal professionals working in the field, we are an umbrella group ourselves with 22 regional groups across the United Kingdom.

July 2011