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Factsheet Eye Care Series

Minimising problems in eye surgery for adults with learning disabilities

Authors: Gill Levy and Leigh Harris with the help from Valerie Scar, Mark Gray, Steve Hockaday, Melanie Gray and members of the special interest group on learning disability and vision

 Click here to download this factsheet as a PDF

June 2007

Listen to the Accessible Summary

Introduction

An increasing number of people with learning disabilities have had successful eye surgery which has greatly improved their quality of life.  People with learning disabilities need their sight as much as everyone else.  Sensitive and carefully planned support must be available to them before, during and after operations.    

The first consideration must be whether an operation will improve a person's quality of life, or prevent deterioration.  Equality of access is outlined by the NHS Executive - which says that no-one should be offered less favourable treatment because he/she has a disability.  

This factsheet (one of a series) aims to increase access to eye surgery for people with learning disabilities.  It suggests ways to make both the treatment and recovery period much less stressful for the patients themselves and for the people around them.   

Other Look Up factsheets on this issue:  

• Eye drops for people with learning disabilities
• Corneal grafts for adults with learning disabilities with keratoconus
• Eye tests for adults with learning disabilities
• Glasses for adults with learning disabilities
• Getting your eyes tested
• Getting new glasses
• Having a cataract operation          

Changing attitudes  

Attitudes to eye surgery are changing.  In the past some supporters were so worried that an individual might react badly that they did not seriously discuss the possible merits of surgery.  This condemned people to years of blindness or poor sight.   

Most ophthalmologists (eye doctors) are now willing to consider operating on adults with learning disabilities, and are working with supporters to ensure successful outcomes.  Ophthalmologists and other eye care professionals often base their decisions on advice from supporters who know the individual well.  

Operating on people with learning disabilities may require ophthalmologists to take a flexible approach, with some procedures tackled in different ways from those used with typical patients.  For example, a person with learning disabilities may be unwilling to have a blood test before the operation.  The ophthalmologist may consider it appropriate to carry out the blood test while the person is under general anaesthetic - depending on the person’s situation and if the anaesthetist agrees.  

People refused surgery in the past  

People with learning disabilities may have had a sight condition diagnosed in the past.  They may have been refused surgery for numerous reasons.  However, procedures (such as cataract surgery) may have changed considerably since their original assessment.   

Although the person may have been previously diagnosed with an ‘untreatable condition’, they are entitled to an up to date examination by an ophthalmologist.  

In the past people with learning disabilities who had long-standing visual impairment might have been refused eye surgery when they acquired other sight-threatening conditions, such as cataract or glaucoma.  For example, for people with Laurence-Moon-Biedl Syndrome, their primary cause of visual impairment is usually retinitis pigmentosa, which is untreatable.  This condition causes tunnel vision.  People with this syndrome are also prone to cataracts in their 20s and 30s.  They need to have cataract surgery, although it will not restore ‘normal vision’.   

Blind and partially sighted people frequently need eye operations to improve their vision.  

Modern surgery  

Only a minority of people having eye operations spend more than a few days in hospital; some people will just require an overnight stay.

Cataracts are usually tackled in a single day.  Modern cataract techniques mean that a whole operation can be done through a very small incision, so people usually recover more quickly than in the past.

Optometrists, GPs and nurses may provide after-care in the community, reducing the number of hospital appointments a person may need.  

Before hospital admission is discussed it is worth considering shorter stays for people with learning disabilities, and how to provide appropriate support.  Some staff have successfully negotiated treatment for individuals as day-patients, with all the person’s pre-operative tests being done on an outpatient basis or by the GP.   

If a person is likely to be less distressed and more easily supported as an outpatient, then consultants are likely to decide that the benefits may outweigh the risks.  

It is important to realise that        

• people may have several eye conditions      
• surgery may not resolve all of them      
• surgery may not restore perfect sight       
• people may still need glasses or contact lenses after an operation   

Planning  

The success of surgery for people with learning disabilities is often totally dependent on having a clearly identified and recorded plan of support that has been prepared before the actual admission and treatment.  

Staff working with people with learning disabilities may need to be able to reassure ophthalmic consultants that an appropriate level of support will be available to individuals during their hospitalisation and after their operation.   

A staff support package (covering both pre-operative and post-operative care) is crucial - despite the fact that most operations are straightforward.  Nurses are seldom available to offer special individual care.  

Our ‘Eye surgery support plan’ has been written to help family carers and staff plan eye operations.   

Anaesthetic  

It is usually considered too risky for people with learning disabilities to have a local anaesthetic.  A general anaesthetic is usually given because of the problems people may have co-operating during a local anaesthetic.  

Local anaesthetic involves considerable co-operation from the patient, who may need to keep their head still for up to twenty minutes, while the operation is performed.  A small minority of people do have local anaesthetics - because their other medical problems would place them at too great a risk for general anaesthetic.   

The benefits of surgery  

Decisions involving surgery must not be prejudiced by the fact that someone has a learning disability.  There needs to be discussion, weighing up the benefits and potential risks.  Before surgery is offered or denied, time should be taken to discuss        

• individual needs       
• social implications of sight loss on their life       
• medical issues - e.g. other existing eye problems, general health      
• possible alternatives to surgery      
• likely outcomes       
• what support the person will need 

It is vital that an informed choice is made.  

Support staff should have high levels of awareness of visual impairment and its effects on individual lives before they are involved in decisions about surgery.  Parents, carers and advocates also need this information, and everyone involved may possibly require advice and support if the damage to the eye is severe.  

Staff and family carers who lack information may react negatively to the suggestion of surgery.  Supporters who do not understand the implications of a particular sight problem may inadvertently cause additional problems for someone undergoing an operation.   

Sight loss  

Sadly, not everyone benefits from surgery.  It is important that individuals are not subjected to operations where poor outcomes are anticipated.  

Whilst surgery may present complex problems, sight loss is traumatic for people - regardless of whether it is sudden or from a slow deterioration of vision.  People (of all levels of ability) frequently feel depressed and anxious when they lose their sight.  People with learning disabilities may lose independence and skills that they have struggled hard to acquire.  They may become more dependent on others. Despair may last for years - or for the remainder of a person’s life.  It is not uncommon for newly blind adults with learning disabilities to develop behaviour which challenges services - especially if they do not receive help from rehabilitation officers for visually impaired people.  

Many supporters have commented that surgery, with a well planned package of support, may be less traumatic than sight loss and living with long-term blindness.  

Local support  

It is important to ask if the hospital has a Learning Disability Link Nurse.  Their role includes helping to make admission and treatment less stressful for people with learning disabilities.  They also offer advice and support to hospital staff who may lack experience with disabled people.  

Many parts of the country now use ‘hospital books’.  These are books, created with and for the person, which record individual need and medical history.  They also explain the person’s likes and dislikes, how they communicate, cope with strange situations.  These books help hospital staff understand how to work with the person.  Hospital books enable people with learning disabilities to share information about themselves.  They can prevent people and their supporters being asked endless questions they cannot answer, and ensure continuity of care.  

Promoting individual need  

The patient’s understanding of the procedure may be limited so it is vitally important to have the same member of staff or family carers supporting them at appointments - to explain and give confidence.  Parents or advocates may also provide continuity if the same staff member cannot always attend.  Ophthalmologists often deal with staff who barely know the individual or his/her background.   

Supporters need to make doctors and nurses aware of the person’s strengths and abilities.  Hospital staff need to know what type of support family carers or staff can provide during their stay in hospital and when they return home.  

It is important that staff and carers can explain to the specialist how the individual is affected by his/her visual impairment.  It is often useful to talk to key people in an individual's life and to make some notes before the appointment.  Checklists to identify changes in a person’s behaviour can be found in the Look Up factsheet, 'Looking for eye problems in people with learning disabilities'.  

Staff accompanying people on appointments, and supporting people during an operation or post-operative period, should remember that their opinion is valued - particularly by medical staff who may have limited experience of people with learning disabilities.   

Parents and staff members who know the individual well can influence the way that procedures are undertaken to gain the maximum co-operation from the person.  They need to be consistent and positive in approach.  

Parents and staff can reduce stress for people with learning disabilities by finding out about the techniques involved in eye examination, as well as the surgical process.  (Further information in the Look Up factsheet, 'Eye tests for adults with learning disabilities')  It may be helpful if people can become familiar with light being shone into their eyes, or practise putting their chin on a chin-rest when being examined, and so on.  It may be possible to borrow equipment with which to practise.    

Talking to the individual  

Many people (of all levels of ability) are terrified of going into hospital for an operation.  Surgery can be quite traumatic, particularly if you have no idea what to expect.  But even if you have had a clear explanation about procedures, it is still an anxious time for individuals and supporters.   

It is important that the person knows that someone they trust will be there with them throughout their time in hospital.    

Before the operation there must be careful preparation.  People need to know as much as possible about what is going to happen to them.  This information needs to be conveyed to them clearly, with supporters taking care not to frighten people with wrong information, old wives’ tales or horror stories about poor practices in the past.  

People may need to accept eye drops after surgery.  They may be an important part of the healing process.  Ways to insert drops and familiarise people with the procedure are described in our factsheet, ‘Eye drops for people with learning disabilities’.  However, some ophthalmologists have operated on people who cannot tolerate eye drops.   

People need to be shown the eye pad and the shield which are worn after the operation.  

People may want written information or audio versions which they can read by themselves.  They may want to read the booklet, ‘Having a cataract operation’ (information on how to obtain this booklet is in the Further Reading section at the end of this factsheet).  Family carers and staff may want to obtain ‘ordinary’ information on eye surgery and write Easy Read explanations for people.   

If surgery is to improve sight, people need advice on how their vision may be enhanced - as they or the people around them may wrongly assume that an operation will restore perfect sight.  People should be warned if they are likely to have any initial difficulties seeing, or will need glasses.    

It is obviously much harder to inform people with limited comprehension about surgery, but it is important that they are told what is going to happen to them, perhaps using hand-on-hand demonstration, or showing them pictures, or models.  People without obvious means of communication need particularly careful preparation for hospital admission.  

Consent to treatment  

Supporters need to understand the law on consent.  Where people with learning disabilities are not able to consent to surgery, a multi-disciplinary ‘best interests’ meeting should be convened.  The ophthalmologist should be invited to attend - or more usually, the meeting can be held at an eye clinic to enable hospital staff to be there.  

Some adults with learning disabilities have refused to have eye surgery because they did not fully understand that they would be returning home soon afterwards.  They associated hospital admission with permanent institutional care.  Frequent pre-operative visits to the prospective ward may be necessary, with hospital staff becoming familiar with an individual and stressing that he/she will only be admitted for a very short period to a ‘go home hospital’ - as against a ‘long-stay hospital’.   

The area of consent is complex.  Further information about consent and 'best interests' can be found in the Look Up factsheet 'Consent for medical treatment and operations for people with learning disabilities'.

Readers in Scotland may wish to obtain advice from  

ENABLE Scotland information Service

6th Floor, 7 Buchanan Street, Glasgow, G1 3HL

Telephone Enquiry Line open Monday-Friday 0141 226 4541

Email: info@enable.org.uk

Website: www.enable.org.uk

Examining the eyes of people who cannot co-operate  

Most people can be helped to co-operate when medical staff examine their eyes.  Key workers may familiarise them with bright lights.  It may be possible for supporters to get them to concentrate on a task (such as looking at a book) while a light is shone into their eyes.  

Some people will not be willing to keep still or co-operate during an eye examination, so it may be worth discussing the possible merits of an examination of both eyes while the person is under anaesthetic.  This may highlight previously unidentified eye problems, allowing an ophthalmologist to obtain detailed information about the condition of both eyes before surgery is attempted to improve the sight of one eye.  Pre-operative eye examinations and surgery can be done at the same time - although this requires detailed planning, with all possible outcomes considered.  An anaesthetist is only likely to agree to this on the day if supporters are well prepared and have a suitable plan for aftercare.  

It may be worth considering doing other tests while the person is under anaesthetic - such as blood tests, hearing tests and so on.  It is not normally difficult to arrange for a blood test to be done at the same time.  (If this is the individual’s first blood test for some time, their GP may suggest that a blood sample be taken to assess if other problems exist, e.g. sickle cell, thyroid problems etc.)  People who will not allow an eye examination often refuse other treatment - such as dental treatment, so it may be possible to co-ordinate other medical interventions at the time of the general anaesthetic.  

Operating on one eye only  

People may have problems with one or both eyes.  Some consultants prefer to operate on one affected eye only - especially if the individual has difficulty co-operating.  They may reserve the option of operating again if something happens to the restored sight.  Restoration of sight in one eye alone can help people with learning disabilities regain lost skills and greatly improve their quality of life.   

Good sight in one eye means that the person is unlikely to be registered as blind/partially sighted.   

Whilst many people with learning disabilities cope well with sight in one eye only, others have difficulties judging depth and distance.  Further information from our Look Up factsheet, 'Sight in one eye (monocular vision) in people with learning disabilities').  

However, an increasing number of people with learning disabilities now have operations on both eyes - with each eye being operated on separately, requiring two hospital admissions.  This is most likely with cataract surgery, whereas with corneal grafts the complications and risks of surgery mean that this will not always be offered.  

Thinking about the issues involved in surgery  

It is important for staff and carers to think through the issues as far as possible in advance - from the beginning of treatment until full recovery.  This may mean that they need to plan activities to keep a person occupied for several days on an hour by hour basis (or even shorter blocks of time) while he/she is in hospital - and reorganise staff shifts and possibly group activities accordingly.   

It is important that staff obtain details of the individual's sight problem, treatment, and possible prognosis from the consultant.  Doctors or nurses may be in a position to provide detailed information, such as:        

• how a person's sight may be improved        
• whether there will be any discomfort or pain       
• the 'usual' course of treatment       
• how long the person will have to go without food and drink before the operation - ‘nil by mouth’        
• whether day surgery is the preferred option - and if not, why not      
• the anticipated time as an in-patient       
• how long someone might be on bed-rest or need to keep still       
• whether the person has to remain in a particular position after the operation (such as surgery for retinal detachment)       
• whether additional sedation will be required       
• how long someone will need to wear bandages, dressings or plaster over his/her eyes       
• whether a person will need stitches and how and when will they be removed        
• whether a period of 'convalescence' is necessary      
• whether glasses or contact lenses are necessary in the long term       
• details of any post-operative treatment that may be required - such as the length of time eye drops may be prescribed  

Keeping the individual calm may be paramount in eye surgery.  It may be possible to find out if the person will need to sit or lie down, or keep his/her head in a certain position after the operation (such as for a detached retina).  It may then be possible to decide how to minimise any disruption to the person's normal daily routine and keep him/her occupied.  

Planning admission to hospital  

It is crucial to explain to the consultant, registrar or any junior doctors involved, and the hospital admissions' officer, that an individual's date of admission must not be cancelled or postponed unless the person is unwell.  Being emotionally prepared for an operation, and then coping with a change of date, is distressing for all of us.   

Planning an admission to hospital and supporting a person having eye surgery may present complex problems for many families and services for people with learning disabilities.  Any change of plan may cause major disruption to the individual, other service users, staff and family carers.  Changes of plan can prove expensive too - particularly when an extra worker has been employed to cover the period when an individual's key worker is busy with the patient, or in situations where staff overtime, night-duty rotas, group activities or transport have been rearranged.  

It is important that there is good communication between all staff/family supporting the person having an eye operation.  Family carers and staff supporting the individual need to establish good relationships with hospital staff and ensure that both groups keep each other informed.  

Medication, allergies and eye patches  

It is important to find out if any medication (such as pain relief) and eye drops will be given and the possible side effects or contra-indications.   

Whilst some doctors wait for the patient to show that they are in pain after the operation, other consultants have prescribed medication before the operation - on the basis that the person cannot readily communicate that they are in pain.  

The timing of an operation may depend on the person’s medication and health care needs, especially if they have asthma, diabetes or epilepsy.  People with these conditions may be adversely affected by fasting before the operation.  Staff and carers need to have detailed information about       

• the person's medical history      
• current medication and other treatment       
• any known drug allergies 

Gathering information may prove difficult - particularly if a person has spent many years in an institution and little was recorded on his/her file.  

People with learning disabilities seldom have their allergies identified and treated.  They may be allergic to plaster, and so may find wearing an eye patch very irritating, resulting in their removing the patch.   

Staff have sometimes reported that eye patches are a constant reminder that the eye has received treatment.  This has resulted in people frequently poking or rubbing their eyes, dislodging the patch.  Some people with learning disabilities have been supported to practise wearing patches before the operations, while some surgeons have agreed not to use eye patches following surgery.  

Pre-operative procedures  

There may be frequent and lengthy hospital visits, with time spent in waiting rooms.  It may be hard to keep people occupied in waiting rooms, so it is important to take magazines or a personal stereo to make waiting less boring.  

The person will usually have several tests to assess if it is safe for them to have a general anaesthetic.  Some people with learning disabilities will be wary of some or all of these tests, so staff or family carers need to be aware of them and prepare the individual appropriately.   

Tests usually include       

A urine sample - the person will be asked to urinate into a jar or small bottle.  If the person needs help to do this, having a supporter of the same sex may make it less embarrassing!      

Blood tests often hurt and involve needles that frighten many people.  If the individual is likely to get very distressed by a blood test, it may be best to ask for this test to be done at the end of the pre-operative visit.        

Blood pressure test usually involves a strap being wrapped around the arm, with air being pumped into the strap.  This does not normally hurt, but it can feel strange.       

A cardiogram requires sticky pads being attached to the person’s bare chest, which are wired to a machine that measures the heart rate.  If female service users need support, female staff or relatives should accompany them.  At the end of the test the pads are pulled off.  This can hurt - especially when people have hairy chests.  

These tests are important to monitor the individual’s safety while under anaesthetic, and should be done if possible.  There are greater risks involved in surgery if this information is not available.  

Visiting the ward before admission  

It is usually possible for staff and/or carers to contact the hospital staff and arrange for people to make several visits to the ward if they are to be admitted.  This will be an opportunity to discuss the person’s special needs and to anticipate any problems.  It is crucial that patients are accompanied by a parent or family carer or knowledgeable worker at all times - including during admission.  It is obviously important that a person is not carefully introduced to staff on one ward, and then admitted to another!  

Ophthalmic nurses may be very happy to work with people with learning disabilities, but may lack the experience.  Some have enthusiastically welcomed both the individual who is to have surgery and the people who are important to him/her.  Obviously visits should be arranged when nurses are not too busy, and time should be allowed for the exchange of information about the person's total care.  This is an important time for supporters to negotiate their role with nursing staff - who does what and when?   

To reduce possible feelings of strangeness, it is worth asking for the person to see the bed where they will stay.  It might be preferable to ask if the person can have a side room.  Try to make the visit pleasant and memorable - perhaps allowing time for the potential patient to have a cup of tea on the ward.  (One advocate turned these visits into a treat for her partner, and reduced the trauma of surgery.)  Time is also needed to help the individual become familiar with the ward, so he/she knows where important things are - such as TV, toilets and so on.  

Some hospitals are willing for staff or carers to stay with the learning disabled person throughout the period of in-patient treatment.  If this is permitted (and it is already acceptable practice for people with special needs), it is worth asking if it is possible to position the individual’s bed on the ward where it will avoid disrupting or inconveniencing other patients, and to allow a worker to be close at hand.  One hospital was anxious to put the person's bed in a position where the support worker could sit close to the bed all day and have enough light to read by when the patient dozed or slept at night.  But not all hospitals are that considerate to supporters.  

Finding out about ward routine can be useful - the doctor's ward rounds, meals, baths, visiting hours, number of visitors allowed and so on.  Hospitals are required to allocate a named nurse to each in-patient.   

It is useful to discuss all aspects of a person's care with this nurse, who should be able to offer advice on the nursing system and the organisation of the ward.  This is an important time to discuss the individual's special needs - perhaps a particular type of incontinence pad may be necessary after surgery, or his/her own staff or carers need to bring in special food, equipment, or things that are important to him/her.  The named nurse or ward staff may provide useful, more detailed information than the doctors about the effects of the treatment and offer advice on specific issues.   

Visits to meet the named nurse may be an appropriate time to discuss potential problems - such as how to keep a person from eye-poking or rubbing his/her eyes after surgery, what to do if someone is terrified of injections and so on.  It is important to discover what follow-up treatment is required (if any) after a person has been discharged from hospital.  If, for example, a nurse is to visit him/her at home to change bandages, it might be useful for the individual and key workers to meet the nurse before admission.  It may be appropriate for parents and staff to practise changing bandages and for the individual to get used to wearing them before the operation.  Staff need to identify potential problems - such as eye-poking - and be proactive to preventing or minimise them.  

Eye-poking, head-banging and possible self-injury  

People who poke or rub their eyes are sometimes denied surgery or it is delayed.  If this happens, help should immediately be sought from a psychologist or challenging needs/behavioural support specialist, to try to establish the reason for the behaviour and to develop a strategy to reduce this behaviour.   

It is also important to minimise the risk of eye infections and damage when people regularly touch their eyes.  Hand cleanliness is crucial for both patient and support staff.  Programmes to encourage hand washing after most activities may need to be instigated before surgery.  It is also important the fingernails are clean and cut with ‘round corners’.  (Square cornered nails do more damage!)  

There are many reasons why people may poke their eyes       

• People may want to dislodge ‘obstructions’ (such as cataracts)       
• They may have a sight-threatening condition       
• They may have itchy eyes from an eye infection       
• They may have hay fever or an allergy, which may feel like grit in their eyes      
• They may be wearing the wrong glasses      
• It may be their way of communicating or attracting attention  

Eye-poking is common in people born with little or no sight (of all levels of ability).  Some eye-poking is just a habit, and does not usually harm an individual in any way.  It provides flashes of light in the brain if certain nerves are intact.  

However some sighted people's eye-poking is a severe problem, and they are at risk of damaging their sight.  Serious eye-poking, head-banging and other forms of self-injury to the head obviously pose special disabilities for staff trying to obtain eye operations.     

The individual's time in hospital  

We all suffer to some degree when in hospital, feeling disempowered, uninformed and disorientated.  However, people with visual impairments may feel particularly vulnerable in unfamiliar environments.  An in-patient ward can be a strange and confusing setting for anyone.  However, people with learning disabilities, who may have limited comprehension, are particularly disadvantaged since doctors and nurses are often unable to spare the amount of time necessary to explain things to them.   

Doctors and nurses must try to explain procedures and treatment in a clear, straightforward way that the individual understands.  Alternatively, staff or carers should interpret this information.  It is therefore vitally important that people whom the patient knows well are available to offer support.  This could take a variety of forms, depending on an individual's level of comprehension, his/her behaviour, the medical treatment, and so on:        

• a worker/family carer staying with the person in hospital (perhaps in a side ward) all the time        
• workers/family carers being available during the individual's waking hours        
• a carefully planned and recorded rota of visitors to cover most of the day 

It is important to stress that staff accompanying people into hospital need to be willing to be involved in all aspects of their care.  This can include escorting the person to the anaesthetist's room and staying with him/her until he/she falls asleep.  Many hospitals will allow this, if they are approached for permission in advance.  It may be more difficult for hospital staff to arrange for key workers/family to be there when the individual recovers from the anaesthetic.  However, it is worth staff or carers asking to be telephoned when the patient has left the operating theatre, so a familiar person is available when he/she comes round.  

Even the best prepared person can feel extremely distressed when waking from general anaesthetic.  They may feel ‘strange’ and be in pain.  They will often have a hand drip, and arm drip as well as eye patch - all of which they may attempt to remove.  Staff close to the person need to use familiar reassurances and language to help the person relax.  It may be necessary to use gentle diversion or take action to prevent the individual from removing the drips or patch and so hurting themselves.  Advice may need to be taken beforehand if this is anticipated.  

All the hospital staff and visitors may need to be advised that approaching the patient's bedside slowly and speaking in a quiet, calm voice is most likely to gain his/her confidence.  People should never be touched without warning.  They need to be called by their name and told what is going to happen to them.  Doctors and nurses should not try to open the eyes of uncooperative patients by force.  They must take advice from people who know the patient well on how to gain his/her co-operation.  

Hospital staff shift changes can be distressing for people with learning disabilities if patients are not supported by a familiar person.  Staff and parents accompanying patients often find themselves constantly explaining things to different members of hospital staff because of shift changes.  Hospital books (see earlier) may reduce this.  An alternative approach is to have a plan of action for the whole in-patient period recorded in the person's medical records. 

People may behave out of character after treatment.  They may be tearful, angry or distressed, or wanting to cling to someone familiar.  Alternatively, they may feel confused and insecure because the family members and staff they previously trusted have allowed them to have such an unpleasant experience.  Whatever behaviour is presented, carers and staff need to be aware that it is telling them something important about how that person is feeling.  People may need special help during this time.  They may keep being sick or perhaps have become incontinent, and require reassurance that no-one is cross with them.  

Activities for people in hospital  

It may be necessary to plan activities to keep a person occupied while in hospital.  His/her ordinary interests, his/her span of attention and level of concentration should be considered.  Activities may need to be planned for very short blocks of time, and it may be important to think about:       

• relaxing activities - such as hand massage or aromatherapy (with oils carefully chosen not to counteract other medication or irritate eyes)       
• table-top or board games        
• favourite music, played on a personal stereo or radio        
• talking books or taped stories       
• watching television or carefully chosen videos 

People who are unwell may not be interested in games, conversation or books, so music may be particularly important in keeping them calm.  Music may need to be chosen carefully, with the volume at the right level - not too loud!  

Staff and carers need to ensure that they have all the appropriate material for activities - such as familiar games, spare batteries for personal stereos and so on - gathered together in advance.  Sessional workers, such as aromatherapists, offering support need to be booked in plenty of time.  

People may prefer to eat little and often, so it may be worth keeping the cheese and biscuits or puddings from a main meal to eat later.  A supply of favourite food and drink may be useful in emergencies!       

Staffing issues  

Adequate staff cover may be the most important consideration if the person is being offered surgery.  If there is not enough support it may be impossible to convince medical staff that an operation is the best course of action.  This must form part of pre-operative planning.   

One-to-one or more staffing may be necessary to provide someone with severe learning disabilities with sufficient physical care and emotional support for the operation and recovery period.  It is vital that he/she is supported by known staff or carers - not by recently appointed agency, nursing bank or temporary staff.  Where current staffing levels do not permit this, an additional worker specially recruited to cover this period would need to be appointed prior to the operation, so that he/she has enough time to get to know the individual well.  But it is greatly preferable that this worker be used to enable established and familiar staff to be released from their normal work to be with the patient.   

There are considerable implications for staffing in many settings if one, two or even three workers are totally involved with supporting one person in hospital.  Rotas and shifts of other staff may be affected.  Carers or workers staying at the hospital may find it very stressful, and keeping an individual calm may be a difficult task.  Staff and carers may need additional supervision or support from their manager and colleagues during this time.  

It is important to consider staffing levels after the person returns home.  Adequate staff cover is needed to ensure that named worker or workers are not called away to deal with other service users, if their job is to ensure that no eye rubbing/poking occurs.  The needs of parents supporting their son or daughter must not be overlooked.  

It is important that staff and carers share information concerning the individual while obviously respecting confidentiality.  The key people in the person's life need to know about the plan to support an individual through the operation and recovery period, and what to expect.  Carers and staff may need to learn new skills - such as changing bandages, giving eye drops, etc.  Routines may be altered considerably to cope with a nurse visiting, or to provide flexibility if the patient needs one-to-one care at home.  Routines may need to be changed suddenly if there are unexpected complications.  

Staff and family carers who are administering drops or changing dressings must wash their hands before touching the person.  Supporters engaging in activities such as smoking or preparing spicy food just before they administer drops, may irritate the eye, causing the person additional problems.  

Hospital visitors  

During longer stays in hospital patients may welcome visits from friends.  Patients should not feel cut off from key people in their lives.  People having surgery may want to show others their hospital bed, the ward, and so on.  

People with learning disabilities are now living long enough to acquire sight problems as part of ageing.  If they can visit friends in hospital, it may help lessen anxiety about hospital admission and eye surgery for them.  

Eye-rubbing after surgery  

We have been told about various strategies staff have adopted to ensure that individuals at risk of damaging their eyes after surgery still benefit from eye operations.  

We cannot recommend how to deal with potential problems because each person is different and surgery may be tackled in different ways.  However, we have recorded how some staff have coped when people were at grave risk of damaging the positive outcome of surgery.         

• Staff obtained an eye-shield from the local hospital, and encouraged the patient to wear it for short periods, followed by longer periods before admission to hospital.  The individual needed to become sufficiently familiar with wearing the shield to sleep with it, eventually wearing it 24 hours a day.  Other staff have used blindfolds in a similar way, after checking their appropriateness with the medical staff involved.   
• One man, who willingly wore sunglasses in bright light (because of his cataracts), continued to wear them after his operation to prevent him from touching his eyes.  He would fall asleep with his sunglasses on, and they were removed by a staff member.  (Note: some people would need toughened spectacles and not all environments would be safe for people wearing sunglasses).  Anti-glare glasses which are issued to people with light-sensitive eye conditions, and are usually issued to fit over a person’s spectacles, can sometimes offer an extra degree of protection.         
• Some organisations have tried to reduce potential eye damage by keeping individuals completely occupied throughout their waking hours, with a staff team working exclusively with the patient.  The aim was to divert the individual's attention when he/she wanted to touch his/her eye.  Use sensory toys, vibrating massagers etc.  Care needs to be taken if using hand creams or other preparations if there is a risk that this will further irritate the eye.         
• A small number of people, unable to co-operate with treatment, have been sedated by doctors.  We have been told of people with challenging behaviour who were sedated until their eye fully healed.  This clearly raises complex ethical and medical issues, but has been used when staff believed that prevention of blindness was in the best interests of the individual.  Time would be required to allow the doctors to choose the right drug and dosage for the individual.  Careful consideration must be given before this is attempted.   

It is important that people who are at risk of damaging their eyes through self-injury receive regular eye-checks while in hospital and after discharge.  People have detached their retina or caused other problems by head banging.  

The use of splints  

We have sometimes been asked if it is appropriate for the person to wear arm-splints after the operation.  Splints are a form of restraint, used in the past but seldom recommended now.   

People wearing splints frequently learn other ways to touch their eye or self-injure.  These new behaviours may place the person at even greater risk than the current behaviour.   

Splinting is almost certainly a violation of an individual’s human rights.

Support from psychologists or local challenging needs team/behaviour support service should be obtained.  

Seeing the world differently  

Some people are immediately aware of improvements in their vision.  Whilst they may have become anxious and withdrawn when they were blind, their ‘old behaviours’ may return when their sight is restored.  A plan of care is needed after surgery for most people with severe learning disabilities.  It is worth asking the consultant before discharge what the individual is likely to be able to see, both close to them and in the wider environment.  After the first outpatient appointment a programme of rewarding visual experiences can be planned, as many people will need help to become motivated to use their sight.  They may need to be tempted to look at interesting objects, television programmes or new hobbies and activities.   

Surgery may not have restored 'perfect sight' to an individual and he/she may take time adjusting to seeing the world in a different way.  Things may appear bigger, brighter, or clearer than before; once familiar environments may seem totally strange.   

Newly sighted people often need the same help, initially, as newly blind people to interpret what they are seeing - particularly if they have been blind for some years and their visual memory has faded.  It is important that carers and staff realise that people's levels of skill may not automatically increase as soon as they see better.  Some people may swiftly regain lost skills, while others may need support to become confident.  It is important that staff do not reduce too quickly the amount of help offered.  

After surgery, people may be prescribed new glasses or contact lenses.  Some people can cope with new glasses immediately.  However many people with learning disabilities need help to feel comfortable wearing glasses.  (Further information from our factsheet 'Glasses for adults with learning disabilities')  It is important that staff and carers find out whether the glasses are for close or distance work, or both.  It is always worth asking if an optometrist/optician can record when/what the glasses have been prescribed for.   

Recovering at home  

It may be advisable for a medical practitioner, or a nurse familiar with eye care, to examine the eye regularly for a few weeks after the operation if the patient cannot explain that he/she is in pain, or discomfort after his/her surgery.  

It may be impossible to stop monitoring the individual if his/her sight remains so poor that he/she keeps banging into things, or has challenging behaviour and may injure the eye.  Staff need education about potential problems, and how and when to obtain help.  

Depending on the surgery involved, people may need a period of 'convalescence' at home to recover fully.  An operation can be a major event in an individual's life and some people may react strongly to it.  It may not be the surgery itself that has distressed someone, but a disrupted routine that has made him/her feel insecure and anxious.  Some people return to normal quickly, others may feel tired or possibly even depressed.  People may have good or bad days - on some days they may want to join in with everything going on around them, but may prefer being quiet on other days.   

Staffing may need to be flexible if there are times when a group wants to go out, but the patient wants to remain at home.  Equally, the individual may feel quite deprived when friends are having fun and he/she cannot join in.  

Some people enjoy all the attention they get when they are ill, particularly if so much attention is unusual for them.  A specific mobilisation plan may be needed, so that staff and carers know when it is safe to reduce monitoring people closely.  Staff then need to stop pampering the patient and encourage him/her to become more active!  

It is important to establish if people can return to their normal routine when they feel well enough.   

Risk assessment  

Before some medical procedures it may be appropriate to carry out a thorough risk assessment on all aspects of the person’s lifestyle.  Some of the factors that need to be considered are          

• Safe activities need to be found to keep the individual stimulated after surgery.         
• All sports that involve contact or bending may need to be avoided.  Swimming may cause irritation or infection.      
• Boredom or under-stimulation may increase the likelihood of self-injurious behaviour.       
• It may be appropriate for the person to withdraw from settings (such as day centres, college and so on) during the ‘risk period’ in case another service user causes injury to the individual.  During the risk period, it is safer to provide a more tailored 1:1 service away from busy environments.      
• Hygiene - hair washing, bathing and face washing all need to be done with care to prevent the risk of injury.  Non-perfumed baby products may be safer to use than the usual soap or shampoo - but advice should be obtained.       
• Wearing eye make-up should be avoided.  There is a possibility that some products could irritate the eye or cause problems.      
• Information should be sought before people insert contact lenses following operations.  

Follow-up treatment  

An operation is not the end of the story!  It is obviously important that all follow-up appointments are kept and supporters continue to monitor people closely for signs of eye problems.  

People who have had surgery to improve their sight usually need regular eye examinations, and new prescriptions for glasses or contact lenses.   

Registered blind/severely sight impaired and partially sighted/sight impaired people are entitled to free NHS sight tests - but we hope that eye surgery will be successful in preventing more people losing their sight.  

If surgery is refused or severely delayed  

Some people do not benefit from surgery.  Others may have operations delayed because they rub their eyes or have health problems.   

However, careful discussion between the service user, their supporters and eye care professionals can sometimes result in surgery being tackled.  This may prevent people living with blindness for decades.  

It may be helpful to approach local advocacy services for support.  

Patients in England may find it useful to consider using the local PALS or complaints procedures.  This can be found at:

http://www.pals.nhs.uk  

Much can be done to make sight loss less traumatic for people with learning disabilities.  Depression, anxiety and 'problem behaviour' may be reduced or even prevented by ensuring that people are offered support from rehabilitation workers for visually impaired people (employed by the local social services/social work department or voluntary society for blind people).  

Other Look Up factsheets on this issue:  

Eye drops for adults with learning disabilities

Corneal grafts for adults with learning disabilities with keratoconus

Eye tests for adults with learning disabilities

Glasses for adults with learning disabilities

Getting your eyes tested

Getting new glasses

Having a cataract operation

 

RNIB has a range of booklets on eye conditions www.rnib.org.uk is their website  

Introduction to the Mental Capacity Act  

Consent pathway http://www.ldhealthnetwork.org.uk/consentpath.ppt

Best Interest Forum http://www.ldhealthnetwork.org.uk/bintforum.doc

Best Interests Guidance for England and Wales (December 2007)

This guidance has been written in order to give additional information and support to people who may have to participate in making decisions on behalf of adults who lack the capacity to do so for themselves. This includes staff working in health or social care (such as doctors, nurses, dentists, psychologists, therapists, social workers, residential and care home managers, care staff, support workers) and carers, families and advocates.

The legal framework for making best interests decisions is defined in the Mental Capacity Act 2005, and further policy guidance is to be found in the Code of Practice to the Mental Capacity Act. This guidance aims to add further to the Code of Practice by looking in more detail at the types of factors that might need to be considered in making a best interests decision, and in considering the process of best interests decision-making.  http://snipurl.com/1x16p

Booklets about the Mental Capacity Act  

1. Making decisions about your health, welfare or finance, who decides when you can't.  
2. Making decisions; a guide for family, friends and other unpaid carers.  
3. Making decisions; a guide for people who work in health and social care.  
4. Making decisions; a guide for lawyers and advice workers.  
5. Making decisions about your health, welfare and finance, who decides when you can't be an easy read version.  
6. Booklets may be downloaded from www.dca.gov.uk/legal-policy/mental-capacity or hard copies may be obtained by telephoning 020 7210 0025

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