What are the most FAQs on abdominal aortic aneurysm screening

1. Will I be offered abdominal aortic aneurysm (AAA) screening if I live outside England?

2. What is the scientific evidence to support AAA screening?

3. What happens if I am a man over 65 and haven't been screened for an AAA?

4. What about women and men under 65?

5. What are the implications for driving?

6. What are the implications for air travel and travel insurance?

7. What permission do I need to give to be screened?

8. Why do I need to give permission for the programme to keep my personal information if I want to be screened? How is my personal information stored?

9. What happens if I give my permission to be contacted about research in the NHS AAA Screening Programme?

10. Does the programme do anything else with the personal information it keeps?

11. Could I find out about other health problems as a result of AAA screening?

12. Where can health professionals find out more about the AAA screening programme?

1. Will I be offered abdominal aortic aneurysm (AAA) screening if I live outside England?

AAA screening programmes have been set up in Northern Ireland, Scotland and Wales. Details are available below:

• NI Direct for details of the programme in Northern Ireland
• NHS Inform for details of the programme in Scotland
• Wales Abdominal Aortic Aneurysm Screening Programme

2. What is the scientific evidence to support AAA screening?

The UK National Screening Committee assesses all the research evidence, pilot programmes and economic evaluations before recommending that a new screening programme be introduced.

The committee decided that an AAA screening programme will deliver benefits at a reasonable cost.

It's estimated that the programme will reduce the death rate from ruptured AAAs among men aged 65 and over by up to 50% and prevent around 2,000 premature deaths a year.

What happens if I am a man over 65 and havent been screened for an AAA?

AAA screening is offered to all men in England during the year they turn 65.

Men who receive a normal result do not need another scan. Men over 65 who havent previously been screened can contact their local screening service without going through their GP.

4. What about women and men under 65?

The programme targets men aged 65 and over because 95% of ruptured aortic aneurysms occur in this group. Men are also six times more likely to have an aneurysm than women.

Ruptured AAAs are less common in women and, on average, occur 10 years later than in men.

There is no evidence to show that inviting women or men who are younger than 65 for screening would deliver major benefits.

However, the risk of developing an aneurysm is higher if you have a close relative, a brother, sister or parent who has or has had one.

This means you can have an ultrasound scan. Speak to your GP to discuss a referral.

You are advised to request a scan at the age that is five years younger than your brother, sister or parent was diagnosed.

Close relatives of men with an AAA should take the usual health precautions of not smoking, having a cholesterol and blood pressure check, and staying healthy.

5. What are the implications for driving?

GPs can advise people to stop driving, and also whether a health condition must be reported to the Driver and Vehicle Licensing Agency (DVLA).

Motor insurers cannot ask questions about health conditions, and so do not adjust premiums on that basis.

The DVLA policy on AAAs states that:

• the DVLA must be informed if the aneurysm grows to 6cm
• the person's licence will be suspended if their aneurysm grows to 6.5cm
• their licence will be reinstated after their aneurysm has been successfully treated

The policy on bus, coach and lorry drivers states that:

• the DVLA must be informed if they have an aneurysm of any size
• the person's licence will be suspended if their aneurysm grows to 5.5cm
• the person's licence will be reinstated after their aneurysm has been successfully treated

The screening programme refers men to vascular surgeons if their aneurysm reaches 5.5cm.

The DVLA policy does not affect car drivers with small or medium aneurysms (3.0-5.4cm) who are part of the programme's surveillance group.

6. What are the implications for air travel and travel insurance?

The Association of British Insurers (ABI) has been advised that AAAs are no more likely to rupture at altitude than on the ground, and it is not aware of any airlines operating a standing rule about refusing patients with this condition.

The ABI is also unaware of any travel insurance policies that contain a specific exclusion for AAAs as part of their standard wording.

If an applicant for travel insurance declares an AAA, the ABI understands that the medical screening process does not ask the diameter of the aneurysm, because to do so would be to expect a degree of medical knowledge on the part of the patient that they might not have.

Patients are instead asked whether or not they have had definitive treatment, such as surgery, and if so, when. They are also asked if they are on a waiting list for such treatment and if they have any other related cardiovascular diseases.

The ABI suggests that anyone with an AAA should declare the condition during the travel insurance application process, or when it has been diagnosed, if they have an existing travel policy.

Where an applicant declares an AAA, they may be charged an additional premium or have the condition excluded from cover.

When looking for cover, a broker can help. The British Insurance Brokers Association (BIBA) operates a "find a broker" service that can help and can be contacted on 0870 950 1790.

7. What permission do I need to give to be screened?

At the screening clinic, you will be asked to give your permission:

• for the programme to store and keep information about you and your visit on the national AAA screening IT system, and to use this information to help offer safe and effective screening
• for the programme to screen you for an AAA (which involves an ultrasound scan of your abdomen) and to inform you of the result
• if you are found to have an AAA, to share your personal information with a vascular surgeon through the National Vascular Registry

Men will only be screened if they give their consent to all three of the points above.

You will also be asked if the NHS AAA Screening Programme can use your information to contact you in the future to let you know about research that is going on in the programme. You do not have to give permission for this to be screened.

8. Why do I need to give permission for the programme to keep my personal information if I want to be screened? How is my personal information stored?

Screening is a diagnostic procedure that requires the persons consent. There is an associated duty of care to record information to provide evidence of what is done, what is found, and to share this with appropriate healthcare providers, so any findings can be followed up.

Recording data enables the programme to ensure that screening, assessment and treatment are effective and timely.

The abdominal scan is only one part of a systematic pathway of care. It would be irresponsible and potentially negligent to offer a scan without ensuring that the safeguards offered by an assured national system are in place.

The screening programme needs to retain personal data so it knows if and when a man has been scanned, and if he has declined screening.
It also allows local programmes to keep track of who has, or has not, been invited for screening and deal with follow-up enquiries.

Personal information is only available to healthcare professionals involved in an individual man's screening or any subsequent assessment or treatment.

The programme controls and processes personal information in a manner that is compatible with the Data Protection Act (the data controller). The programme uses a third party (Northgate Public Services) to process and manage this personal information in a secure database.

Although the database is a national system, strict data governance means that personal details can only be accessed by staff involved directly in an individual man's screening process.

If a man is screened and found to have an aneurysm, it will be necessary to share his information with a vascular unit to support further investigation and potential surgery.

Men may decide, after they have been invited or attended screening, that they do not want the NHS AAA Screening Programme to contact them again in the future or provide any ongoing care for them either directly, or via any other healthcare professional. Men who ask to be removed from the screening invitation or recall process will be given information about the risks of their decision.

Requests for removal must be made in writing to their local screening unit. Men can subsequently request to be reinstated into the screening invitation and recall process at any time.

9. What happens if I give my permission to be contacted about research in the NHS AAA Screening Programme?

The NHS AAA Screening Programme works closely with medical researchers to improve screening and the care of men being screened for AAA and men with AAAs. If men give permission for the programme to contact them about research, they may be sent information about ongoing research and how they can get involved, if they wish to do so.

All involvement in NHS research is optional. The decision to participate in research or not does not affect the care men receive from the NHS.

Men who give their permission to be contacted about research will be able to decide whether to participate on a project-by-project basis.
The programme does not pass any personal information on to medical researchers directly. All research projects must first be approved by the NHS AAA Screening Programme Research Committee.

10. Does the programme do anything else with the personal information it keeps?

The programme has an obligation to monitor its own performance and determine if it can be improved or refined. This ensures the service is of good quality and achieving its main aim of preventing men dying from the complications of having an aneurysm.

One of the ways the programme measures performance is by monitoring what happens to men who have been invited for screening. It does this by obtaining information for men invited for screening from the Health and Social Care Information Centre (HSCIC).

This information is either held by the HSCIC directly (data on hospital admissions, which is collected from all NHS Hospitals) or obtained from other government organisations (data on deaths are held by the Office for National Statistics).

Toensure confidentiality, the programme anonymises the data by removing information such as men's names and dates of birth. It only passes NHS numberson to the HSCIC, which it uses to link to health records. The HSCIC matches the information provided with the information it holds and, again, removes all identifiable information, including NHS numbers.

Anonymous data from the programme and the HSCIC is then passed to the University of Leicester, the programmes current academic partner. The University of Leicester analyses this information and provides the programme with a report on its performance. At no point will an individual man's identity be known to the analysis team at the University of Leicester. All data is held securely at the University of Leicester and is not made available to any other parties at any time.

The data resulting from this process will be held for a maximum of 20 years. This is because aneurysms develop very slowly and it takes a long time to properly assess the full benefits of the screening programme. If you do not want your anonymised healthcare data used in this way, then please contact your local screening service.

11. Could I find out about other health problems as a result of AAA screening?

No, during the ultrasound scan (the screening test), the technician only looks at your aorta specifically to check if you have an AAA.

If you have any concerns about your health, speak to your GP.

12. Where can health professionals find out more about theAAAscreening programme?

Information for health professionals can be found on the AAA screening programme website.