Sometimes there will be choices to be made about your care and we encourage you to be a partner in your healthcare.

When patients work with healthcare professionals to make decisions on their health care plan and treatment, this is called shared decision making.

Before your appointment

It can be helpful to write a list of questions that you would like answered and have these with you during your appointment, along with a pen and paper to write things down.

During your appointment

If you are asked to make a choice about your care, you may have lots of questions. The following three questions can be a good place to start:

• What are my choices?
• How do I get information and support to help me make a decision that is right for me?
• What are the pros and cons of each option for me?

Attention allows the brain to effectively sift through the vast quantities of sensory and cognitive information it continuously receives and can be considered to optimise cognitive processing. Attention can be divided into three anatomical networks: alerting, orienting and executive. Each of these represents a distinct process, and they work independently but also interact.

Attentional fluctuations are one of the cardinal features of Dementia with Lewy bodies and also feature prominently in Parkinson’s disease. Current medical treatments for memory and thinking problems in dementia are in the form of attention boosters. Interestingly it is not known whether caffeine, the most widely taken stimulant, ingested by 90% of adults on a daily basis, has any direct, beneficial effect in Parkinson’s disease or dementia. In this study we examine whether caffeine improves specific subtypes of attention in patients with Dementia with Lewy bodies, Parkinson’s disease and healthy individuals.

How does the trial work?

We will randomly allocate you either caffeinated or decaffeinated coffee and then ask you to complete computerised tests of attention and a 20 metre timed walk. You would need to be able to attend 4 times over a 9 day period and will have to stop drinking tea/coffee for 1 week (we will give you a supply of decaffeinated tea/coffee to drink instead!).

Participants

We are recruiting 3 groups for this study:

• people with Dementia with Lewy bodies
• people with Parkinson's Disease
• healthy older adults (without any other neurological conditions).

If you wish to take part in the study, please contact us. 

Swelling (Oedema)

Swelling of your residual limb (stump) will occur after amputation but this will gradually reduce and your leg may continue to shrink for many months.

Swelling may be kept under control by elevating your stump and the use of a compression sock (shrinker).

A member of the clinical team will advise you how and when to wear your compression sock.

Phantom Limb Sensation

Phantom limb sensation is an extremely common occurrence. It can be a painful or non painful feeling where the limb is not present.

Although the body has lost a limb, the brain still has the old geography (map) wired in and therefore it still transmits pain signals.

If you are experiencing phantom limb sensations, please discuss this with the clinical team.

The staff who look after you:

Nurse Specialist - provides wound care, general advice on issues such as diabetes and pain management, including phantom limb pain. She is also able to prescribe medications in relation to pain and infections associated with your amputation.

Physiotherapist - provides the treatment for local patients and coordinates the provision of physiotherapy if you live outside the local area.

Occupational Therapist - teaches upper limb patients to use their artificial arm, and advises patients on how to achieve as much independence in the activities of daily living, such as washing, dressing and cooking. They will also advise both upper and lower limb patients on wheelchairs, driving, return to work and leisure activities.

Podiatrist - assesses and advises you on how to look after your remaining foot.

Counsellor - talks with patients and family members either before or after their amputation. They can help with the many
difficult emotions and feelings which often occur around the time of amputation or if a child is born with a disability.

Prosthetist - prescribes your prosthesis (artificial limb) and provides all ongoing care.

A team of specialist technicians make all the artificial limbs on site and also carry out any ongoing repairs.

Reach
Reach is a friendly, caring place for children and young people with upper limb differences and their families.  They give support and information to inspire and build confidence.  There are local branch networks throughout the UK and Ireland that provide support and an opportunity for children and parents to meet. Connecting families is a vital part of Reach’s work and the bonds this creates is priceless.  Whether it’s at our family weekend, branch meetings or on a Facebook forum, they help members to build relationships that last a lifetime. For more information visit www.reach.org.uk or telephone 0845 1306 225.

Steps
Steps are a national charity supporting children and adults affected by a lower limb condition such as clubfoot or a hip condition. For more information visit www.steps-charity.org.uk or telephone 01925 750271.

Meningitis Now (formerly Meningitis Trust)
Meningitis Now were the first meningitis patient group in the world, founders of the meningitis movement and the only charity dedicated to fighting meningitis in the UK. For more information visit www.meningitisnow.org or telephone 0808 8010388

Blesma
Blesma exists to guarantee that our limbless veterans are not failed, forgotten or left to fend for themselves. For more information visit www.blesma.org

Limbpower
Limb Power was launched in November 2009 to engage amputees and individuals with limb impairments in physical activity, sport and the arts to improve quality of life and to aid lifelong rehabilitation. For more information visit www.limbpower.com

The British Association of Prosthetists and Orthotists (BAPO)
For more information visit www.bapo.com

Changing faces
Changing Faces supports and represents people who have conditions or injuries which affect their appearance. For more information visit www.changingfaces.org.uk or telephone 0207 391 9270.

Sports Activities

Deloitte Parasport
Deloitte Parasport is designed to inspire, inform and signpost disabled people and those interested in disability sport to high quality opportunities. For more information visit www.parasport.org.uk  and use the search tool to find local clubs.

Bristish Atheletics
For more information visit www.britishathletics.org.uk and click 'Grassroots’ tab and select ‘disability athletics’ to find out more about competitive athletics.

These are core exercises that can be completed following a below-knee or above-knee amputation.

If you are unsure what to do, please do not attempt the exercises, but contact your Physiotherapist for advice.

Try aiming to do up to 10 of each exercise, up to twice a day. If you experience any pain or discomfort stop doing the exercises and seek advice from a Physiotherapist.

If you require exercises for a different level of amputation, please ask a Physiotherapist.

P.I.R.P.A.G. (Physiotherapy Inter Regional Prosthetic Audit Group) - Physiotherapy Exercises following Transfermoral (above knee) Amputation 

P.I.R.P.A.G. (Physiotherapy Inter Regional Prosthetic Audit Group) Physiotherapy Exercises following Transtibial (below knee) Amputation 

How can I be referred to the service for an assessment?

How long do I have to wait for the assessment?

Where and how does the assessment take place?

How long do I have to wait for the equipment to be installed?

How much does the equipment cost?

Is it difficult to operate the equipment?

How long does it take to install the equipment?

What if I change my television or want to add more functions?

Do I have to look after the equipment?

What if I move address, can I take the equipment with me?

Installation: All installations are carried out by the Electronic Assistive Technology Service. The date of installation will be arranged with the service user as soon as possible following the assessment. The date may depend on additional work being completed by other agencies, for example if additional mains sockets have been requested. The installation has to wait until all preparatory work is completed.

The user will need to be present, and ideally a family member or carer, as equipment training will be provided by the team on the day

Support: All EAT equipment is loaned to the user for as long as it is needed. We understand that needs may change and will provide support and adjustment as needed. Please contact the service if you have any concerns or need adaptations on the equipment installed. 

Service and Repair: The equipment is serviced annually, however if there are any problems with the equipment or if changes are required, please contact the Electronic Assistive Technology team.

In the event of a breakdown, please contact the Electronic Assistive Technology Service on 0117 414 5899.

All equipment is installed and supported by our in-house team of technical and clinical staff. They will consult the user on the day of installation and will offer training on how to use the equipment once fitted.

The service is available for anyone of all ages and medical conditions who meet the provision criteria. This criterion is defined by the NHS England Service Specification for Complex Disability Equipment: Environmental Controls.

Provision Criteria:

• Profound and potentially complex physical disability, such that they are unable to operate standard controls for functioning independently in the home.
• Where simpler and cheaper non customised solutions are not suitable or appropriate.
• Cognitively and physically able to operate EC equipment consistently.
• Able to demonstrate sustained motivation to use the EC equipment.
• Individuals requiring multiple control functions integrated into a single means of access as multiple devices are inappropriate (including also potential for integrating functions for communication, computer access and/or powered wheelchair control.

Exclusion Criteria (for equipment provision by the service);

• Where simpler and cheaper non customised solutions to the identified needs of the patient are available and appropriate for the individual.
• The individual patient does not have the cognitive ability or motivation to operate the EC equipment. This shall normally be established though a period of trial of some sample solution of equipment.
• Provision of equipment is inappropriate due to social, environmental or other circumstances. Given the nature of the medical conditions, compliance with the criteria may not be apparent from the referral information, and therefore are to be applied following the assessment.

Reference: 

The service is provided to people of all ages and medical conditions who meet the provision criteria. This is defined in a national service specification set by NHS England for all EAT services in England (https://www.england.nhs.uk/publication/environmental-control-equipment-for-patients-with-complex-disability-all-ages/).

The service can provide equipment when:

• Someone is unable to use standard controls to function independently at home due to a complex physical disability. The impairment will often affect the upper limbs and the user may find items such as remote controls, mice and keyboard etc. difficult to use.
• When more simple non customised solutions are not suitable or appropriate. This includes making adjustments to the environment.
• The user must be able to understand how to use the equipment, either the environmental controls or the computer.
• The user is also motivated to use the equipment.
• Integration of equipment is required when multiple options are not appropriate.