New Directions Joint Learning Difficulty Service Salford Primary Care Trust Accessible Well-Person Checks Report into the introduction of well-person checks for adults with learning difficulties in Salford. Cath Rotherham Healthcare Facilitator (Learning Difficulties) August 2006 1 New Directions Joint Learning Difficulty Service Salford Primary Care Trust Accessible Well-Person Checks Report into the introduction of well-person checks for adults with learning difficulties in Salford. Report Prepared by: Cath Rotherham (Healthcare Facilitator – Learning Difficulties) Report Prepared for: Andrew Clough (Director of Nursing and Risk Management - PCT) Dave Clemmett (Head of Service – Joint Learning Difficulties Team) Margaret Anderson (Professional Lead – Practice Nurses) Date of Report: 11.8.06 Introduction It is known that people with learning difficulties have high levels of health care needs but have difficulties accessing primary care services which can result in conditions going undiagnosed and/or untreated. There are many reasons cited for this including people with learning difficulties (or their carers) not recognising the signs of ill health, accessibility problems, confusion over consent and diagnostic overshadowing, which is described by the NPSA as, ‘overlooking symptoms on the assumption that they are part of the persons learning disability’ (NPSA 2004) The failure to obtain timely treatment for health conditions can then result in more difficult to treat symptoms or even hospital admissions that could have been prevented. This may go some way to explain some of the health inequalities that we know exist for this client group. Health inequalities such as preventable deaths being four times higher and only 20% of eligible women receiving a cervical smear as opposed to 80% of women in general. One way of addressing this situation is to provide a comprehensive health check for this client group. This pro-active approach will provide primary care staff with an opportunity to provide health tests as well as general health promotion. This report describes the piloting of an accessible well-person check and the amendments made to it following its evaluation. The Drivers for Comprehensive Health Checks (supported by accessible information) 1) Once a Day (NHS 1999) Stated that GP Practices should, ‘encourage and support people with learning disabilities and their carers to attend well woman/well man and screening clinics…’ Furthermore, the guidance pointed out that, ‘regular health checks should ensure that the need for community health services is detected and acted upon’. 2 2) National Patient Safety Agency (NPSA 2004) The Patient Safety Priorities :– Understanding the patient safety issues for people with learning difficulties The NPSA identified five priority areas, of which three can be partly addressed by the introduction of an accessible well-person check. These are: Swallowing Difficulties: ‘Problems associated with eating and drinking can be life threatening for people with learning disabilities. They can lead to poor nutritional status, dehydration and aspiration that can lead to chest infections, a leading cause of death among people with learning disabilities’(NPSA) Lack of Accessible Information: ‘Harm may result if a person with a learning disability is unable to understand information relating to illnesses, treatment or interventions’. A particular concern also noted was, ‘Healthcare professionals not having the resources to explain treatment or care in accessible ways. Illness or disease being miss or un-diagnosed: ‘Access to treatment is often delayed because symptoms are not diagnosed early enough. This could lead to undetected serious health conditions and avoidable deaths’ The other two recommendations from the NPSA’s report relate to the ‘Inappropriate use of physical intervention (restraint)’ and the ‘Vulnerability of people with learning disabilities in general hospitals’. Indirectly the well-person check can also address these two areas as, for example, behaviour of a challenging/aggressive nature may be related to undetected pain or illhealth. 3) Treat Me Right–better healthcare for people with a learning disability. Mencap (2004) This report recommended Primary Care Services should proactively identify peoples’ health problems by offering annual health checks to all people with a learning disability. The report supported the idea of accessible information being provided in all healthcare settings, and identified that 70% of GPs did not have accessible information in their surgeries. 4) Disability Discrimination Act (1995) A principle of this act is that organisations should make ‘reasonable adjustments’ to ensure that people with a disability are not excluded from services and do not get worse services than people without a disability’ 5) Signposts for Success This report stated, ‘there is emerging evidence that routine health checks can lead to the identification of previously unrecognised health problems in people with a learning disability. Early identification can prevent the development of more serious problems and produce long-term benefits. 3 6) You Can Make a Difference:- improving primary care services for disabled people (NHS 2004) In looking at adjustments to policies and practices this report suggests, ‘providing annual health checks to groups who are at high risk of physical ill health, such as people with mental health problems or learning disabilities. 7) The National Care Standards (2000) These standards state that ‘all people with a learning disability living in residential care should receive an annual health check’. 8) Improvement Expansion and Reform – Ensuring that All Means All (Valuing People Support Team 2003) This report urges PCTs to specifically consider how they will include their learning disabled population in their mainstream work otherwise they will continue to be excluded and ‘all’ will not mean ‘all’. 9) Better Metrics (2006) – Measurable objectives for Primary Care Services In the data PCTs collect the Better Metrics lists: % of Learning Disabled Patients offered a comprehensive health check. It also identifies that, ‘People with Learning Disabilities and their families will be offered easy to understand information about their health’ 10) Salford PCT’s Six Pledges Accessible well-person checks are in line with the 6 pledges, particularly: Pledge 1 – Protect People and help everyone enjoy longer healthier lives. Pledge 2 – Provide better and more services. Health Action Plans / Health Facilitators (Department of Health 2002) In addition to the above drivers it is important to mention the link between accessible wellperson checks and Health Action Plans / Health Facilitators. Health Action Plans (HAPs) are individual health plans written for people with learning disabilities. The purpose is to identify health actions that will make a positive difference to the health and well being of the individual. The idea of Health Action Plans was recommended by the Department of Health in their white paper ‘Valuing People’ (2001). They also recommended that each individual with a learning difficulty should be given the opportunity to have a Health Facilitator – this being someone who could help the person with their health needs; especially navigating around the various health services available. In Salford over 400 adults with learning difficulties now have health facilitators and health action plans. In developing the plans the person is supported to visit a wide range of health 4 professionals dependent on their particular needs – such as dentists, opticians, dieticians, psychiatrist etc. A health facilitator would also look to arrange a well-person check for the person they support. A recent audit with the health facilitators identified that the uptake of routine health appointments is concerning. The audit identified that many people with learning difficulties do not seek support with basic health issues such as smoking and dieting. In addition the uptake of cervical and breast screening tests was also poor. In providing an accessible well-person check the Practice Nurse has an opportunity to check with the person (and their health facilitator if present) that these basic health issues are not being overlooked. Designing the Accessible Well-Person Check In designing the well-person check it was important too ensure that it was compatible with the I.T computer systems presently in operation within the GP Practices in Salford, these being Vision and Emis. To achieve this the template was designed with the support of Carol Hart (Quality Manager). The reason an I.T. compatible template was needed was to enable any information gained as a result of the well-person check to be ‘read coded’ instantly. Read coding is when health conditions are given a specific code which enables Practices to identify groups of patients with particular conditions. It also enables Practices to identify trends as well as the number of patients with particular conditions who attend their Practice. The read codes assist in providing follow up care for those with long-term conditions or any condition where regular monitoring is recommended. The use of read codes is a national system – which provides health information to the Department of Health for future planning of budgets and services. Read code evidence is also used for GP Practices in the QOF (Quality and Outcome Framework) reviews – the outcome of the QOF review being one of the factors related to financial payments for GP Practices. Paper versions of well-person checks are easier to produce but when completed the results of the health consultation can easily be overlooked as paper copies become filed away. Paper copies can be logged onto the computer systems following the consultation – but this requires additional time which is of a premium within busy GP Practices. A further reason to have an I.T compatible system is that the present health check templates, for example for patients with Coronary Heart Disease (CHD) or Diabetes, are all designed in this way. This keeps the template familiar to the Practice Nurses who will be implementing it. There were a number of reasons for designing the well-person check for use by Practice Nurses, rather than a comprehensive health test to be carried out by the GP. In the main a patient with a health worry will visit the GP – often supported by their carer. However, for those who do not recognise the signs or symptoms of ill health, or who have little carer support, the well-person check can identify health problems (or potential problems) and treat accordingly. The Practice Nurse is well placed to carry out this role, and can refer the patient onto the GP where needed. Another factor in the design of the template was to keep it as similar to the present well-person checklist as possible. In addition, the accessible template needed to include those health needs that we know to be problematic for people with learning disabilities. The key was to get a balance to ensure it covered the main health concerns without being too lengthy or cumbersome. 5 Prior to designing the draft template I spent time with two Practice Nurses to look at their role and the type of consultations they deliver. I examined numerous accessible well-person checks that other regions have adopted and looked at their merits and limitations. I also discussed the initiative and obtained advice from Margaret Anderson, who is the Professional Development Lead for Practice Nurses. One of the main decisions taken in putting the draft well-person template together was to make it general rather than syndrome specific. To make the template syndrome specific would have meant designing numerous versions. Instead, the template covered the main health areas but Practice Nurses were provided with a paper document which detailed those additional health tests that they should consider if the patient has a known syndrome. The final well-person template which the Practice Nurses piloted included the following areas: Diagnosis Mobility Issues Communication Assessment Sensory Assessment (eg vision and hearing) Skin Assessment Medication Basic Examinations (BP, weight, urine testing etc) Sexual Health (eg due smear test) Oral Hygiene Lifestyle (eg smoking, drinking, diet / swallowing difficulties) Continence Health Promotion (eg alcohol, smoking Referrals (record of any referrals made as result of consultation) Health Action Plan (Practice Nurse writes, in simple words, her recommendations) Recall (if needed) 6 Piloting the Well-person Checklist A group of 100 individuals with learning difficulties were identified who were either able to consent to having a well-person check or for whom it was in their best interests. The wellperson template did not contain any health tests, questions or treatments that would not normally be offered by Practice Nurses so the piloting of the template did not fall into the category of research. The Health Facilitators for the 100 individuals were also identified. Health Facilitators being the person (normally a paid carer) who takes a lead on supporting the person with their health needs. Practice Nurses were approached to inform them of the initiative, then in due course the Practice Nurses for the 100 individuals were approached to see if they would pilot the template. In approaching the Practice Nurses individually it provided an opportunity to explain the rationale for an accessible well-person check. It also provided an opportunity to address any initial concerns such as issues around consent. The pilot group included individuals with a wide range of health care needs, this being to ensure a representative cross section was chosen. The pilot group were also chosen so that most Practice Nurses would only be piloting the template with one or two individuals. This was important to prevent any one Practice Nurse being expected to allocate a dis-proportionate amount of time to the initiative – as well as to ensure that enough Practice Nurses used the template to make the evaluation results meaningful. Following the identification of the individuals and the Practice Nurses, the next stage was then to visit the Practice Nurses to load the template onto their computers and explain the template to them. This visit was completed by myself and a member of staff from the Data Quality Team. In addition to explaining the template, the Practice Nurse was provided with a Guidance Pack which contained the following: A copy of the accessible invitation letter – to be used to invite those on the pilot group in for the well-person appointment. A selection of accessible handouts / leaflets that the Practice Nurse could give to the individual or their carer during the consultation. Leaflets on smoking, diet, cervical smears, breast screening, diabetes etc Purchase and order details for other accessible handouts / leaflets Information on consent. Information on syndromes and the additional health checks needed. A selection of accessible pictures that could be used to progress the consultation eg pain chart. A blank copy of a Health Action Plan (HAP) – to be used if the patient or their carer did not bring along their own HAP documentation. (HAPs are documents that can be used by the Practice Nurse to record any recommendations from the well-person check. The advantage of the HAP being that the patient has a written record to refer to which they can share with their carers as needed) 7 Information booklet for Practice Nurses on cervical and breast screening for women with learning disabilities. Information from the National Patient Safety Agency (NPSA) and Mencap related to the healthcare needs of patients with learning disabilities. Contact details for ‘New Directions’ (Salford’s Joint Learning Difficulty Service). This incase the Practice Nurse felt the need to seek further advice or services for the individual. Contact details for obtaining further supplies of free leaflets printed by the Department of Health. The Guidance Pack was explained to the Practice Nurse before an electronic version of the pack was loaded onto their computer. The electronic guidance pack can be easily updated as new leaflets / information can be emailed directly to the Practice Nurse for inclusion in their folder. Following the visit to the Practice Nurse – a final email was forwarded to them to confirm the name of the individual(s) to invite in for the well-person check. EVALUATION RESULTS The Practice Nurses were provided with an evaluation form to complete following each wellperson check. The results of the pilot are as follows: Section 1 (Numbers involved in the Pilot) A total of 50 Practice Nurses at 23 Practices were originally involved, these being linked to the 100 individuals identified to be in the pilot group. Of the original 23 Practices: 2 x Practices had to be removed from the pilot as they had older version computer systems which were not compatible with the template. 1 x Practice wanted to defer involvement owing to QOF Pressures. 1 x Practice constantly failed to respond to phone-calls / messages. 1 x Practice did not want to offer the well-person check to those individuals who could not give their own consent to the appointment. 2 x patients moved out of Salford, and were therefore removed from the pilot group. This resulted in 14 patients being removed from the original group and 9 patients being deferred to a later date. This reduced the number of patients in the pilot group from 100 to 77. The well-person template was therefore offered to 77 patients. 42 evaluation forms were returned (54%) Of the 42 returned forms:– 31 patients had turned up for the appointment and 11 patients had not turned up for the appointment. The reasons added to the evaluation form to explain the non-attendance included: 8 1 x patient was in hospital (has regular health checks owing to his diabetes) 1 x patient had to cancel as carer (sister) could not get the time off work to accompany to the appointment. 1 x patient’s mother declined the invitation as she reported that he will not communicate or comply with any interventions. Flow Chart (numbers involved in the pilot) 31 Evaluated health checks 42 Evaluation Forms returned 14 Declined 9 77 well-person checks offered. Deferred 100 Patients eligible to participate Section 2 (Where the appointment took place) 29 appointments all took place in the Practice Nurses room at the GP Practice. 2 appointments took place in the patient’s own home. Section 3 (Average length of time of the appointments) The longest appointment was 60 minutes duration The quickest appointment was 15 minutes duration The average appointment time was 32 minutes duration Section 4 (Number of Health Facilitators / Carers in attendance) 29 x patients were supported to the appointment. 2 x patients attended alone. Section 5 (Number who brought their HAP form) 18 x patients brought their HAP form 13 x patients did not bring a HAP form 9 Section 6 (Number of Practice Nurses who added their recommendations onto the HAP) 12 x patients had their HAP form completed by the Practice Nurse. 13 x patients were given health actions to follow but they were not written onto the HAP form by the Practice Nurse. 6 x patients did not have any health actions identified by the Practice Nurse. (NB: The nurses had blank HAP forms incase the patient forgot to bring theirs to the appointment) Section 7 (Alterations to Template) 10 x Practice Nurses felt that some alterations that were needed to the template. 9 x Practice Nurses felt that no alterations were needed to the template. 12 x Practice Nurses left this question blank. The alterations / comments recorded were as follows: Health Promotion for smoking / diet. Well-person concerns – to cover menstruation and contraception. Smoking status to be added. Alcohol consumption. BP / Weight Sexually active rather than impotent. Continence assessment – should include occasional accidents. Attends dentist regularly. Patient visually impaired – none of the options fitted. Section 8 (Syndrome Specific Checklist) 1 x Practice Nurse referred to the syndrome specific checklist. 20 x Practice Nurses did not need to refer to the syndrome specific checklist. 5 x Practice Nurses recorded that this was ‘not applicable’ for their patient. 5 x Practice Nurses left this question blank. 10 Healt h act ions recorded on HAP Healt h act ions not recorded on HAP No healt h act ions ident if ied Section 9 (Health Issues) Sensory Assessment 22 Skin Assessment Health Actions recommended 9 Referral made 20 Accessible leaflet / info given Communication Assess. Advice given. 7 Left Blank 24 Not Applicable Known concern present Mobility New Concern identified No concerns identified The following matrix details the number of patients for whom a particular health issue applied, and the resulting actions. 1 1 2 1 2 7 2 3 26 3 2 2 Medication review 26 1 2 2 5 Exam Findings 25 1 5 1 1 Test Results 17 1 4 9 1 1 Sexual Health 27 2 2 Oral Health 21 8 2 3 Lifestyle 18 9 4 12 1 Continence 20 6 2 3 5 1 Health Promotion 17 4 1 9 7 4 4 1 2 3 1 3 A patient was referred to the GP for his hip problem. Communication Assessment A patient was referred to the optician (home visiting service) A patient was referred to the GP for referral on for a hearing test. A carer was given advice on how to recognise if hearing was impaired. 11 1 1 2 6 1 The specific comments and actions (where recorded by the Practice Nurses) related to the above numbers are as follows: Mobility 4 3 6 Sensory Assessment A patient was referred to audiology as the patient was concerned about hearing loss. A patient was referred to the GP for referral on for a hearing test (patient had an appointment for ear syringing. Two patients were referred to the optician (home visiting service) Skin Assessment A patient had a new concern identified related to skin care as incontinent. A patient was advised to use oilatum in bath due to dry skin. A patient was provided with cream following new concern identified. Medication Review A patient had a new concern identified related to constipation. The patient was given advice on OTC (over the counter) medications for constipation. A patient was referred to the GP as their medication needed to be reviewed. Exam Findings Two patients would not cooperate with investigations eg Blood Pressure test. A patient had a slightly raised blood pressure – the advice given was to lose weight and increase exercise. Test Results A patient had their bloods taken and the support worker was told to ring for the results. The Practice Nurse could not confirm if concerns present or not until blood results returned. A patient would not allow the Practice Nurse to take the bloods. A patient would not cooperate with any tests. Sexual Health A patient had a new concern related to the use of condoms. Advice was given on condom use and condom failure. A patient had a new concern – having recently been diagnosed as pre-menopausal. A patient was given advice and an accessible leaflet on TSE (Testicle Self Examination) Oral Health A patient had a known concern related to difficulty getting an NHS dentist. A patient had a last dental check 18 months ago – the patient was advised to go for a dental check which the carer will organise. A patient has dentures but does not use them. Lifestyle A patient was given advice and an accessible leaflet on BSE (Breast Self Examination) A patient was given advice on their chocolate intake. Two patients were given advice on smoking cessation. A patient was given advice on diet / exercise – though was very reluctant to take the advice – but the carers constantly encourage. 12 A patient was encouraged to continue with their low fat diet. Continence A patient had a new concern identified – the Practice Nurse has requested a MSSU(mid stream sample of urine) to exclude a UTI (urinary tract infection) then will review. A patient had protein present when the urine sample was tested (sample was then sent to Pathology but no infection present). A patient had a known concern of chronic constipation – advice was given about increasing fibre and fluids. A patient had medication commenced. A patient was give advice about drinking plenty of fluids. A Practice Nurse will test for protein & glucose if concerns / symptoms arise. Health Promotion Two patients were given advice to increase exercise. A patient was given advice about reducing the fat in their diet. A patient was given advice on menopausal symptoms. A patient was given an accessible leaflet on cervical screening. A patient was given an accessible leaflet on breast examinations. A patient was encouraged to carry on with their weight loss. A patient was given advice on stopping smoking – but the patient refused to even consider stopping. Section 10 (Any Other Comments) 9 x Practice Nurses provided the following additional comments: The carers forgot to bring HAP but will put concerns into plan on return. Quality of information dependant on carer’s knowledge of patient. No formal assessment of risk of sores due to continence problem. This lady lives with mum – carer has no other input from social services. Inappropriate consultation. Patient unable and unwilling to communicate / participate. Complete consultation conducted 3rd party via carer. Seen regularly for reviews/updating action plan. Already brought in regularly by carers for reviews/updating action plan. Type 2 diabetes. Appointment given for fasting blood test and urinalysis. Template quite cumbersome to go through compared to other templates we have on system for other conditions eg diabetes / CHD. Could be easy to miss some areas of the template out because of the format. Inappropriate consultation. Patient unable to communicate and demonstrate understanding. Needs met by carers. Assessment carried out via carers. The patient seemed to enjoy the consultation – sister wanted to answer on the patient’s behalf but with good eye contact and encouragement the patient participated well. First time doing this – did not find it easy. More training sessions would be a good idea. Didn’t have a HAP – did have a record of all related concerns though. Brought HAP but not sure on how to use it. 13 Constraints to Project. The introduction of this, as with any other new initiative, put time pressures on Practice Nurses and the Practice Staff. This competed with other time pressures that the Practice Nurses were involved in - such as preparing for QOF reviews. There were concerns about ‘consent’. It is a difficult area even for those professionals who work with the Learning Difficulty Services. The assumption was made that all Practice Nurses would adopt the ‘best interest’ principle when offering the well-person check to patients who could not give their own consent. This assumption was incorrect – and resulted in a number of patients being withdrawn from the pilot group. The role of ‘Health Facilitator’ is new. A good consultation with the Practice Nurse will often be as a result of an informed Health Facilitator being present and proactive. Many Health Facilitators will only just be getting accustomed to their role. The provision of a ‘Health Action Plan’ is a new document – again its purpose and function may not be clear to all Health Facilitators or Practice Nurses. The Practice Nurses who used the EMIS computer system were disadvantaged in that it does not have the capacity for linking / drop down menus to the degree that the VISION computer system does. The well-person check was only evaluated from the perspective of the Practice Nurses. Including the patients and the carers / Health Facilitators would have resulted in more comprehensive findings. Evaluation results show unnecessary overlap between ‘Communication Assessment’ and ‘Sensory Assessment’. SUMMARY During the health checks a total of 15 new concerns were identified, which resulted in 4 new referrals. In addition the Practice Nurses provided advice on 45 issues, gave out 10 accessible leaflets and recommended 31 health actions for the patients involved. In view of the number of patients seen (31) this equates to half of the patients having a new health concern picked up. Main Outcomes of well-person checks Practice nurse actions 30 25 Patients 20 15 10 5 50 45 40 35 30 25 20 15 10 5 0 Health issues (advice provided) 0 New concerns identified Referrals made 14 Health actions recommended Leaflets given The pilot is timely as the DRC (Disability Rights Commission) have just launched their report following a formal inquiry into the health inequalities faced by people with learning disabilities and/or mental health problems. The report: Equal Treatment – ‘Closing the Gap’ recommends annual health checks for people with learning disabilities (recommendation 9) as they recognised that a pro-active approach to health care is essential for the early diagnosis and treatment of health conditions that otherwise may go untreated. Finally, making available an accessible well-person check will also be in line with the new Disability Equality Duty (DED) that comes into force in December 2006. This duty requires PCTs to actively promote disability equality, as opposed to avoiding ‘disability discrimination’ which can still result in unintentional exclusion. RECOMMENDATIONS 1. Review and agree alterations to the template (in line with evaluation results) along with two Practice Nurses who were involved in the Pilot. 2. Carol Hart (Quality Manager) to reformat template in line with agreed alterations. 3. Write to all G.P’s / Practice Nurses to inform them of the existence of the new template, detailing the merits of including it on their computer systems. Suggest that the template could be used either: When a patient presents for a well-person check. Opportunistically. To target patients with learning difficulties who fall into high-risk groups. To target patients who have not visited their GP within the last 3 years. (NB: Targeting patients with learning difficulties will be a realistic option when the GP Practices have established their learning disability registers – using Read Codes) 4. Work with Quality Manager to agree timetable for loading new template at all GP Practices. 5. Review the template with regards to EMIS computer systems. 6. Monitor guidance from the Department of Health related to comprehensive health checks / well-person checks – ensuring that Salford are in a position to respond. REFERENCES Department of Health (2001) Valuing People: A new strategy for learning disability for the 21st century. London. The Stationary Office. Department of Health (2002) Action for Health: Health action plans and health facilitation. London. The Stationary Office. Department of Health (1999) Once a Day, London, NHS Executive. Key Highlights of Research Evidence on the health of people with learning disabilities: Institute for health research at Lancaster University. Mencap (2004) Treat Me Right:- better healthcare for people with a learning disability. 15 Disability Rights Commission (2006) Equal Treatment: Closing the Gap – A formal investigation into physical health inequalities experienced by people with learning disabilities and/or mental health problems. FURTHER INFORMATION / CONTACT DETAILS For further information on the contents of this report contact: Cath Rotherham Healthcare Facilitator (Learning Difficulties) Salford PCT St James’s House Pendleton Way Salford Tel: 0161 212-4590 Mobile: 07801-928011 Email: catherine.Rotherham@salford-pct.nhs.uk 16