Guide for carers

Summary Care Record

The GP may want to store information on the person’s Summary Care Record ‘additional information’ page. This is an electronic record containing important patient information i.e. preferred communication methods, significant medical history, current medication and reason for taking them, management of long term conditions, immunisation records and End of Life care plans. This can be seen and used by authorised staff in other areas of the health and social care system and is a very helpful way of storing useful information about the person.

Please discuss the benefits of this with the person. If you have concerns about their capacity to understand and consent, then discuss with key people in their lives, to decide whether sharing this information is in the persons ‘Best Interest’ (in line with the Mental Capacity Act 2005).

Reasonable Adjustments and Communication

Please ensure the health care professional is aware of any adjustments that need to be made to help the person access their health appointments. You can ask that this is stored on the summary care record. Explain to the health care professional the best way to communicate with the person, to make sure they understand the Annual Health Check questions as much as possible. The health care professional should talk to the patient directly and not just through you as their carer. You can help the health care professional to talk to the person in a way they will understand. If you have any communication tools you use with the person, then please make sure you use these.

Other reasonable adjustments that you can request before the appointment include:

• An appointment date/time that suits the person with a learning disability.
• Longer appointment times – we recommend that a minimum of 30 minutes is arranged for the Annual Health Check. Alternatively, the appointment can be split over a couple of appointments, if the person is unlikely to tolerate a long consultation.
• Asking for a specific health care professional that the person may feel more comfortable with or requesting a male or female health care professional if preferred.
• Asking for a quiet space to wait

Your Measurements

Why is height and weight important? If a record of weight is kept, then take this with you to the appointment. It is important to tell the health care professional if the person has recently lost or gained weight without any major changes to their diet, as this could be an indicator of something being medically wrong. The health care professional can also use the person’s height and weight measurements to calculate the person’s BMI (body mass index).

Blood pressure

Blood pressure – if the person keeps a record of their blood pressure, as it is being monitored for any particular reason, please bring the records to the appointment. This will help give the health care professional an idea of how the person’s blood pressure has been over a period of time and will help identify any changes. If the person doesn’t already have a blood pressure record, the health care professional should still measure the person’s blood pressure, to help check their heart is healthy.

Flu injection

All people with a learning disability can get a free Flu Vaccine. This is usually given in September, October or November. Chest infections are the most common cause of death in people with learning disabilities and a chest infection can be a complication of the flu. Don’t forget to check the person has been asked if they want the Flu Jab. If they don’t like injections, then a nasal spray can be given instead and as the less restrictive means (principle 5 MCA). Please talk to the health care professional for more details about this.

Mobility

Do you think the person’s ability to move around and their stability has changed at all in the last year? Do they have any physical disabilities or known conditions?

Do they use any aids to help with movement? In what condition are the aids?

Is the person tripping over more frequently or continually checking their footing?

Do they experience pain or stiffness when moving, e.g. sitting, standing, lying or going up stairs?

Would they benefit from seeing a physio?

Any concerns about changes in mobility need to be discussed with the health care professional, as they may be caused by an underlying health problem.

Being Healthy

This section is about the person’s lifestyle. It is good to think about the following areas:

• Diet – do they eat a balanced diet?
• Exercise – write down what they do each day of the week in a normal week e.g. where they go, how much they walk, whether they do any other activities.
• Smoking – does the person smoke? If so how many and would they like to try to give up smoking?
• Alcohol – does the person drink alcohol and if so how much?
• Drugs – does the person take any recreational drugs? It is important to tell the health care professional about this, so they can make sure the person gets help to understand the impact of their life decisions, as well as identifying services that may be able to help them stop.

Sexual Health and Contraception

This may seem quite personal, but it is good for the health care professional to know if the person is having sex or is potentially having a sexual relationship. The age of consent to sexual relationships and people with learning disabilities have the right to safe relationships.

• Does the person have a boyfriend/girlfriend or husband/wife?
• Is this relationship considered to be sexual?
• Do they need contraception?
• Do they need support to keep safe?

This way the health care professionals can make sure the person gets the support to understand how to keep healthy, safe and to think about what contraceptive options are available. Also consider whether they are potentially vulnerable to sexual abuse or sexual exploitation?

Bowel Cancer

Bowel Screening – If the person is aged between 60 and 74,

• Have they received a bowel screening pack in the post?
• Did they send back the samples?

This is very important for early detection of bowel cancer. This cancer can be treated easily if it is found early. If you think the person didn’t do the screening, or didn’t receive a screening pack, then please let the health care professional know. You can also ask the bowel screening service to send an easier to use kit if necessary.

Female Health Checks

Breast checks

This again might seem embarrassing, but it is very important to check breasts and armpits to see if there are any lumps in them. A lump might be cancer and if it is found early, it can often be easily treated.

• Does the person know how to check their breasts for lumps and do they check them regularly?

If they don’t, then you should tell the health care professional so that they can talk to them about whether they are happy for the health care professional to check for them. Before you go to the appointment, prepare the person by helping them understand the importance of the health care professional checking their breasts. There are some good films on YouTube. If they don’t have capacity to understand, discuss with the health care professional and key people in their life to decide whether having a breast check is in the person’s Best Interest. If they are supported with their personal hygiene, then make sure the care plan includes you regularly make visual checks e.g. changes in shape, colour or any discharge etc. For more info, search online for visual breast checks.

Periods and Menopause

Consider their menstrual cycle:

• Is it regular?
• Have there been any changes?
• Is medication being prescribed to manage the woman’s menstrual cycle?
• Have any changes in behaviour been noted which link in with their cycle?
• Do they have any signs of the menopause e.g. becoming more anxious, change in sleep pattern, hot flushes, mood changes, irregular cycle etc.

Breast Screening

If they are a lady aged over 50, or if they have a family history of breast cancer:

• Have they been invited to breast screening and did they go?

This is very important as 1 in 8 women will be diagnosed with breast cancer in their lifetime. 78% of women will survive it so early detection is critical. For women who can’t self-check thoroughly, this is even more critical. If they haven’t been invited for a breast screening, please discuss this with the GP.

Cervical Screening (Smear Test)

• Is the woman up to date with her cervical screening?

If not then has this been fully considered and have they been given all the information to make an informed decision? If a woman declines cervical screening or lacks the capacity to consent and it is determined as not being her best interest then a management plan will be required.

Male Health Checks / Testicle checks

This again might seem embarrassing but it is very important to check testicles to see if there are any lumps in them. A lump might be cancer and if this is found early, it can easily be treated.

• Does the person know how to check their testicles for lumps and do they check them regularly?
• If they are supported with their personal hygiene, have you noticed a change in size to their testicles or noted an increased tenderness when washing?

Before you go to the appointment, prepare the person by helping them understand the importance of the health care professional checking their testicles at the annual health check. Again, if they don’t have capacity to understand, discuss with key people in their life as to whether you feel it is in the person’s Best Interest to have a testicle check carried out.

Abdominal Aortic Aneurysm Screening

If they are a man aged 65 to 74:

• Have they been invited to an Abdominal Aortic Aneurysm screening?
• Did they go?

If they haven’t been invited you can look up the AAA screening service and request an appointment for this. This is a very simple check to see if they have a large valve in their chest. If they do have an enlarged valve, this can be treated. If it isn’t treated, it can burst, which is instantly life threatening – hence this screening is so important. Talk to the health care professional about this for more information.

Eyes

• Do you think the person’s eyesight has changed in the last year?

Think about whether they have stopped being interested in things they used to be e.g. reading, looking at books or watching TV etc.

• Could they have eye pain? e.g. rubbing eyes or other behaviour changes.

Consider whether these changes could be because they can’t see as well as they used to?

People with a Learning Disability are 10 times more likely to have serious sight problems than the rest of the population. 6 in 10 people with a Learning Disability need glasses. Poor eyesight can impact a person’s mood, lethargy, interest in activities and can also cause headaches. Remember – See Ability has a wide range of eye care resources and easy read material for people with learning disabilities.

• Do they have prescription glasses and do they wear them?
• When was their last eye test and were there any issues achieving this?

Ears

• Do you think the person’s hearing has got worse in the last year?
• Do they need the TV to be louder?
• Have you ever noticed that they have started ignoring you or not respond until you raise your voice?

Let the health care professional know if you have any concerns, as they may need to examine the person’s ears to check for infection etc. They may also want to refer the person for a hearing assessment. Consider whether the person will be able to complete a hearing assessment and what support they may need for it.

Teeth

Consider how good they are at brushing their teeth.

• Do they regularly brush?
• Do their gums bleed?
• What condition are their teeth and gums in?

Poor dental hygiene leads to gum disease and gum disease can increase the risk of health conditions such as strokes, diabetes and heart disease.

• When did the person last see a dentist and do they need a referral to Special Care Dentistry if they can’t access the dentist?

Respiratory/chest

41% of deaths of people with learning disabilities were due to chest infections, compared to approx. 15% for the rest of the population (3rd Annual LeDeR report).

Please make sure you get any concerns about breathing/swallowing/chest problems checked out promptly by a health care professional.

Consider if the person has suffered from any of the following issues over the last month or two:

• A cough that just won’t go away
• Coughing up sputum [slimy stuff]
• Blood in their sputum
• Breathlessness – feeling like they can’t get enough air in when they breathe
• Wheeziness – when it makes a squeaking noise when they try to breathe in
• Choking episodes
• Coughing when they eat
• Coughing when they drink

Do they often get chest infections? How often do they require antibiotics?

Bowels/Poo

This might seem embarrassing but it is very important that the health care professional knows what the person’s poos are like. Changes in bowel movements can often mean there is something wrong that needs checking. Constipation is a common problem with people with a Learning Disability and can be very serious. It can lead to haemorrhoids or rectal prolapse, but also in severe cases it can lead to life threatening complications. The LeDeR program states it is thought that 20–50% of people with a learning disability suffer from constipation.

If you keep bowel records, please make sure you take these to the appointment with the health care professional. If not, then before you go, try to find out how often the person has a poo and what it is like.

• Do they get diarrhoea [runny poos]?
• If the person wears pads, what does the poo look like?
• Do they get constipation?
• Is there blood when they wipe their bottom?
• Do they understand what a healthy poo is and what to do if their poo habits change?

Frequent diarrhoea can actually be a sign of chronic (long term) constipation.

It is important that everybody is able to talk about poo and understands its importance to our health.

Urine/Wee

• Have you noticed any changes when they wee?

Tell the health care professional if they have started to go more often, started to go at night, started having wet underwear, not being able to get to the toilet quickly enough, if you have noticed signs that it might be painful when they wee or if the urine is very smelly and/or dark in colour.

• If they wear pads do you notice anything when they are wet?

A change in someone’s weeing can be a strong indicator of health changes that may not have been spotted, so make sure you inform the GP. Also consider whether the person has been seen by a continence nurse in the past? If so, document the date of the assessment, who saw them and what was the outcome?

Epilepsy

If the person has seizures take all recent seizure records with you, so the health care professional can look at them. This is especially important if the person doesn’t see a Neurologist or psychiatrist regularly. Take a record of when the medication was last reviewed if you have this, as well as any record of when they last had blood tests.

If the person has not had any seizures for two years there should be a discussion about whether medication can be reduced.

Make sure you consider bone health, as this can be affected by some Epilepsy medications.

• Do they see a Neurologist or psychiatrist or any other epilepsy specialist?

Please provide the health care professional with details of when the person was last reviewed by a specialist.

Heart

• Has the person had any signs or symptoms which may indicate a problem with their heart and/or lungs? (Cardiovascular system)

Consider the following:

• Do they get ‘puffed out’ or tired easily?
• Do they get pains in their chest?
• Do they get swollen ankles?
• Do they get palpitations? [when it feels like your heart is beating really fast]
• Do they get giddy or ever feel faint?

Diabetes

Type II Diabetes can develop at any time. If the person is overweight or has a high diet with high sugar and fat content, then they are at a higher risk. Please make sure you tell the health care professional about this so they can consider checking blood sugar etc.

Has the person shown any of the following symptoms that may indicate diabetes?

• Excessive thirst
• Tiredness
• Frequent weeing
• Unexplained weight loss

If they already have a diabetes diagnosis, make sure you take any relevant information, summaries of their blood sugar records, who they see to monitor this, what their diet is like and any issues with managing this.

• Are they able to tolerate finger prick tests and blood tests?
• Do they see a podiatrist?
• Have they been invited for a Diabetic Retinal Eye Screening?
• Are they able to comply with this?

Feet

• Can the person manage their own toe nails or do they visit the podiatrist?
• Are there any obvious problems on the feet or between the toes, any signs of pain, itching or discomfort?
• Are the toenails thick, misshapen or abnormal?

Please discuss any concerns with the health care professional, who may want to examine the person’s feet or observe them walking etc. The health care professional can refer to a foot specialist/chiropodist if required.

Pain

People with learning disabilities do not have a higher pain threshold than people in the general population. However, some people with learning disabilities may not be able to tell us if they are in pain. They may show pain through behaviour changes or facial expressions.

• Does the person show any signs of pain?
• How do they express this?
• Are they taking any medication for pain and does this help? (remember some pain medications can make you constipated.)
• Have there been any recent changes in behaviour? E.g. grimacing, crying, self-injury etc.
• If the person is not able to tell you they are in pain have you completed a Dis Dat or other pain assessment?

It is helpful to have these available.

Skin

If possible, check the person’s skin before the appointment. Make a note of any bruises or sores and note any moles and whether they are scabby or have changed in colour or shape. If the person has lots of moles, it is good to keep a body map record of what their moles look like, so you can notice if there are any changes. Changing moles may indicate skin cancer, so this needs picking up early to be treated.

Mental Health

Consider whether there have been any significant changes in their behaviour, sleep pattern etc. Take a summary of records of incidents (please don’t take a whole file as the GP won’t be able to analyse all incidents, but just a summary from the people who know the person well).

• Have there been any big life events which may have impacted their mental health e.g. a death, a move, loss of house mate, loss of key staff or day activity etc?
• Is there a history of self-harming or suicide attempts and whether there is any information the GP needs to be updated on regarding safety planning?

The health care professional can also refer the person for a review by a psychologist or psychiatrist if required.

Dementia

• Have you noticed any possible signs of memory changes?
• Have they lost interest in activities they used to enjoy?
• Do they become confused about instructions they previously would have been able to follow?
• Do they have mood swings which are new to them?

It is worth considering that people with Down’s Syndrome have higher risk of early onset dementia. It is very important that physical health changes are ruled out before a diagnosis of dementia is given by a specialist.

Medication review

The health care professional will ask about all of the medications that the person is taking, and will look to see whether the medications are right for the individual. If the person is on any medication, or any “use when needed” medication, please bring along a record of when it has been used and why it was needed.

• Has the person been on a medication for their mental health for a long time and are not under a psychiatrist?

Please see if you can find any information about why it was originally prescribed, so the GP can review it and make sure they aren’t being over medicated.

There is a national project called STOMP (Stopping Over Medication of People with a learning disability, autism or both with psychotropic medicines) that has more information about this.

End of Life

Although this can be a difficult subject to talk about, it is important that people with Learning Disabilities have the equal right to a good death.

• Does the person have complex health needs and has been becoming more unwell recently, or is having frequent hospital admissions?
• Is the person over 75 with other health conditions which may cause them to be frail?
• Is the person over 85?

Talk to the health care professional about whether it is the right time to make an advanced care plan. Where possible the person should be involved in making decisions about their end of life care. If they have capacity to consent, they can be involved in writing an Advanced Care Plan or ReSPECT plan. Or, if the person lacks capacity to understand these complex decisions, a Best Interest meeting with the key people will need to take place.

The health care professional can make referrals to the Palliative Care Team/local hospice if appropriate. They can also support discussions about resuscitation (CPR) and if/when this would or wouldn’t be in the person’s Best Interest. If a DNAR (Do Not Attempt Resuscitation) form is being completed this should be discussed with the person or in a best interest meeting if the person lacks capacity. Learning disability must never be recorded as a reason for a DNACPR order.

When possible it is important to plan ahead, to ensure the most dignified and peaceful death. There are also easy read resources to help aid discussions with the person to help them understand more about End of Life Care.

My Care Passport

• Does the person have a completed copy and is it up to date?

This is extremely useful should the person need to go into hospital, as it can help the hospital staff understand how they are to care for the person. It provides specific details about the person’s needs, key people involved in their care, likes/dislikes and how they should be supported in hospital e.g. for health investigations.

Assessing capacity to consent to video consultations

This guidance supports decision making between health care professional and people who are being invited in for a learning disabilities annual health check via video consultation. For the purposes of the Mental Capacity Act the decision maker is the person with learning disabilities or their care team, but any best interest decision is collaborative.

Principle 1 and 2 of the MCA

Using the easy read resource that is in the invite letter explain to the person the process of video consultation.

Using the easy read resource explain the benefits of using video consultations:

• You do not need to go into surgery.
• You can see your health care professional in your home.
• Your health care professional can understand some of your health needs.
• Your carer can support you.
• If you do not want a video consultation you can go into surgery instead.
• If your health care professional needs to examine you, for example touch your tummy, they will see you in surgery.

Demonstrate a video consultation using a video chat on their device while another staff member is in another room.

Check the person’s understanding/ability to retain/weigh up and use and communicate information about the conversation:

• What have we just talked about?
• Why is it a good/bad idea?
• Did you recognise the person on the screen?
• Are you able to talk to the person on the screen?

Document the conversation. If you believe a person is unable to understand the information given then that is enough.

Principle 3

If the person is able to understand, retain, weigh up and use and communicate information regarding the decision but says that they do not want a video consultation, then offer a face-to-face consultation. If they continue to decline their annual health check, explore the reasons why and think about how to manage the risks of not having one.

Principle 4

If a person is unable to understand, or retain, or weigh up and use or communicate (by any means), document that you believe they lack capacity to consent to the video consultation.

You do not need to make the best interest decision alone. Speak to the health care professional who will speak to family members and others in their lives.

If the person has a Lasting Power of Attorney for Health and Welfare or a Court Appointed Deputy for health and welfare decisions, they must be consulted as they are the decision maker.

Apply a benefit-burden approach and document whether it is in their best interest to proceed with a video consultation.

Reasons video consultation may not be in their best interest:

• It is clear that an examination will be required.
• Technology is unavailable.
• There may be safeguarding concerns or a history of coercive control.

Principle 5

If it is recorded that consultation in the home ensures health needs can be met, then video consultation is the less restrictive means. If a person has previously expressed distress at going to see their GP, then video consultation is the less restrictive means.