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L10(L2) The room and environment must be prepared to meet the palliative care needs and wishes of the Immediate child/young person and their family/carers buy januvia 100mg on line, and allow them the privacy needed to feel that they can express their feelings freely trusted januvia 100 mg. L11(L2) All members of the clinical team must be familiar with the bereavement services available in their Immediate hospital generic januvia 100mg. L12(L2) Children/young people and their families/carers must be made aware of multi-faith staff and facilities Immediate within the hospital discount januvia master card. Discharge and out-of-hospital care L13(L2) Any planned discharge must be managed by the named nurse who will coordinate the process and Immediate link with the child/young person and their family. L15(L2) Support for children/young people and their families/carers must continue if they choose to have Immediate their end-of-life care in the community. Families/carers must be given written details of how to contact support staff 24/7. Management of a Death (whether expected or unexpected) L16(L2) The team supporting a child/young person, and their family/carers, at the end of their life must adopt Immediate a holistic approach that takes into consideration emotional, cultural and spiritual needs, their ability to understand that this is the end of life, and must take account of and respect the wishes of the child/young person and their family/carers where possible. L17(L2) If a family would like to involve the support of members of their home community, the hospital-based Immediate named nurse, as identified above, will ensure they are invited into the hospital. L18(L2) Young people, parents and carers will be offered an opportunity to discuss the donation of organs Immediate and tissues with the Donor team. L19(L2) The lead doctor/named nurse will inform the hospital bereavement team that a child is dying. They Immediate should only be introduced to the family/carers before a death has occurred, if they have specifically requested to meet them. L20(L2) Families/carers must be allowed to spend as much time as possible with their child after their death, Immediate supported by nursing and medical staff, as appropriate. It is essential that families have an 262 Classification: Official Level 2 – Specialist Children’s Cardiology Centres. Section L – Palliative care and bereavement Standard Implementation Paediatric timescale opportunity to collect memories of their child. L21(L2) When a death occurs in hospital, the processes that follow a death need to be explained verbally, at Immediate the family’s pace and backed up with written information. This will include legal aspects, and the possible need for referral to the coroner and post-mortem. Where possible, continuity of care should be maintained, the clinical team working closely with the bereavement team. Help with the registration of the death, transport of the body and sign-posting of funeral services will be offered. L22(L2) Informing hospital and community staff that there has been a death will fall to the identified lead Immediate doctor and/or named nurse in the hospital. L23(L2) Contact details of agreed, named professionals within the paediatric cardiology team and Immediate bereavement team will be provided to the child/young person’s family/carers at the time they leave hospital. L24(L2) Staff involved at the time of a death will have an opportunity to talk through their experience either Immediate with senior staff, psychology or other support services, e. Ongoing support after the death of a child/young person L25(L2) Within one working week after a death, the specialist nurse, or other named support, will contact the Immediate family at a mutually agreed time and location. L26(L2) Within six weeks of the death, the identified lead doctor will write to invite the family/carers to visit Immediate the hospital team to discuss their child’s death. This should, where possible, be timed to follow the results of a post-mortem or coroner’s investigation. The family/carers will be offered both verbal and written information that explains clearly and accurately the treatment plan, any complications and the cause of death. Families who wish to visit the hospital before their formal appointment should be made welcome by the ward team. Section L – Palliative care and bereavement Standard Implementation Paediatric timescale L27(L2) When a centre is informed of an unexpected death, in another hospital or in the community, the Immediate identified lead doctor will contact the family/carers. L28(L2) If families/carers are seeking more formal ongoing support, the identified Children’s Cardiac Nurse Immediate Specialist/named nurse will liaise with appropriate services to arrange this. Section M - Dental Implementation Standard Paediatric timescale M1(L2) Children and young people and their parents/carers will be given appropriate evidence-based Immediate preventive dental advice at time of congenital heart disease diagnosis by the cardiologist or nurse. M2(L2) The Specialist Children’s Cardiology Centre must ensure that identified dental treatment needs are Immediate addressed prior to referral (where possible) and any outstanding treatment needs are shared with the interventional/surgical team and included in referral documentation. M3(L2) All children at increased risk of endocarditis must be referred for specialist dental assessment at Immediate two years of age, and have a tailored programme for specialist follow-up. M4(L2) Each Congenital Heart Network must have a clear referral pathway for urgent dental assessments Immediate for congenital heart disease patients presenting with infective endocarditis, dental pain, acute dental infection or dental trauma. All children and young people admitted and diagnosed with infective endocarditis must have a dental assessment within 72 hours. M5(L2) Specialist Children’s Cardiology Centres must either provide access to theatre facilities and Immediate appropriate anaesthetic support for the provision of specialist-led dental treatment under general anaesthetic for children and young people with congenital heart disease or refer such patients to the Specialist Children’s Surgical Centre. Section A - The Network Approach 9 Paediatric Congenital Heart Disease Standards: Level 3 – Local Children’s Cardiology Centres Standard Implementation Paediatric timescale A1(L3) To ensure that children and young people receive as much non-interventional treatment as close to Immediate their home as is safe, Congenital Heart Networks will be supported by Local Children’s Cardiology Centres. The precise shape of each Congenital Heart Network will be determined by local need and local circumstances, including geography and transport. A2(L3) Each Local Children’s Cardiology Centre will provide appropriate managerial and administrative Within 6 months support for the effective operation of the network. A3(L3) Local Children’s Cardiology Centres must belong to a defined Congenital Heart Network and must Immediate comply with protocols, including those for shared care and pathways of care as defined as part of network arrangements. Each Local Children’s Cardiology Centre will provide pathways of care and management of congenital heart defects agreed with the Congenital Heart Network: a. Prenatally diagnosed congenital heart defects If prenatal diagnosis of congenital heart defects has been made or is suspected the mother will be referred to the network fetal cardiac service. Counselling will take place including discussion about the location of the delivery of the baby. Neonates and infants diagnosed with congenital heart defects Each Local Children’s Cardiology Centre will provide close monitoring for the development of heart failure, cyanosis or arrhythmias, and their initial management by medical treatment, if appropriate. Section A - The Network Approach Standard Implementation Paediatric timescale the following: Murmurs Cyanosis Chest pain Palpitations Syncope or dizziness Screening because of family history of congenital heart defect, cardiomyopathy or other syndromes Kawasaki disease e. Ongoing care of children and young people diagnosed with congenital heart defects Local hospitals will refer children/young people to the Local Children’s Cardiology Centre as appropriate, for close monitoring for the development of heart failure or cyanosis, depending on the underlying heart defect, for the monitoring and treatment and control of arrhythmias, and for the adjustment of various cardiac drugs. A4(L3) Local Children’s Cardiology Centres will adhere to their Congenital Heart Network’s clinical Within 1 year protocols and pathways to care that will: a. Section A - The Network Approach Standard Implementation Paediatric timescale collectively they provide a national service); e. A5(L3) There will be specific protocols within each Congenital Heart Network for the transfer of children Within 6 months and young people requiring interventional treatment. A6(L3) All children and young people transferring across or between networks will be accompanied by high Immediate quality information, including a health records summary (with responsible clinician’s name) and a management plan. The health records summary will be a standard national template developed and agreed by Specialist Children’s Surgical Centres, representatives of the Congenital Heart Networks and commissioners. Cardiological Interventions A7(L3) Local Children’s Cardiology Centres will agree with their Congenital Heart Network clinical protocols Immediate and pathways to care that will require all paediatric cardiac surgery, planned therapeutic interventions and diagnostic catheter procedures to take place within a Specialist Children’s 268 Classification: Official Level 3 – Local Children’s Cardiology Centres. Section A - The Network Approach Standard Implementation Paediatric timescale Surgical Centre. Local Children’s Cardiology Centres may not undertake any paediatric cardiac surgeries, planned interventional catheter procedures or diagnostic catheter procedures as part of their investigation into congenital heart disease. Local Children’s Cardiology Centres may undertake coronary angiography and cardioversion. Non-Cardiac Surgery A8(L3) Local Children’s Cardiology Centres will agree with their Congenital Heart Network clinical protocols Immediate and pathways to care that will ensure 24/7 availability of pre-operative risk assessment by a Congenital Heart team including a paediatrician with expertise in cardiology and paediatric anaesthetists, in discussion with a paediatric cardiologist, for patients requiring non-cardiac surgery or other investigations, and other specialist advice, including a decision on the most appropriate location for that surgery or investigation. External Relationships A10(L3) Each Local Children’s Cardiology Centre must demonstrate formal working relationships with the Immediate network Specialist Children’s Surgical Centres and Specialist Children’s Cardiology Centres, according to local circumstances. Section A - The Network Approach Standard Implementation Paediatric timescale A11(L3) Local Children’s Cardiology Centres must have a close relationship with local community paediatric Immediate services, to ensure the provision of a full range of community paediatric support services particularly for children and young people with complex medical and social needs. A13(L3) Each Local Children’s Cardiology Centre must cooperate to allow specialist consultants doing Within 6 months outreach clinics and multidisciplinary team meetings to gain remote access to the Specialist Children’s Surgical Centre or Specialist Children’s Cardiology Centre system and enable immediate access to patient data. A16(L3) Each designated paediatrician with expertise in cardiology will liaise with other local District General Within 1 year Hospitals, Primary Care and the local cardiac networks, forming a link between them and the Congenital Heart Network. A17(L3) Each Local Children’s Cardiology Centre must have identified registered children’s nurses with an Within 1 year interest and training in children’s and young people’s cardiology. B2(L3) Local Children’s Cardiology Centres must have locally designated registered children’s nurses with Within 1 year a specialist interest in paediatric cardiology, trained and educated in the assessment, treatment and care of cardiac children and young people.
Babies should be reviewed by a dietitian at around 12 months of age so the need for formula can be considered generic januvia 100 mg. It is important to check if they contain adequate levels of protein and fat for young children for growth cheap januvia online visa. Alternative milks in children over 1 year of age purchase cheap januvia on line. Should not be used in babies with food protein induced enterocolitis syndrome (FPIES) to rice discount januvia 100mg with mastercard. Excluding foods from the diet during breastfeeding is rarely required, and if recommended, the maternal nutritional intake should be supervised, assessed and reviewed by a dietitian. These formulas are made up of broken down proteins and are able to be digested without an immune reaction. Whether there is a family history of allergies, asthma, or eczema can be helpful for diagnosis. ASCIA also recommends that you should speak to your doctor or specialist about the benefits and safety of allergen immunotherapy before commencing any treatment for a food allergy. ASCIA recommends that you should talk to your doctor or specialist about specific testing available for a food allergy. How will I know if my child has a food allergy? Avoid giving your child peanuts and foods containing peanuts before the age of six months. There is evidence that infants should be given allergenic solid foods including peanut butter, cooked egg and dairy and wheat products in the first year of life. These foods are: milk, eggs, wheat, nuts, seeds, fish and shellfish. For advice on preventing or managing food allergies, call HealthLink BC at 8 1 1 to talk to a registered dietitian. Call 9-1-1 immediately if you see signs of a severe allergic reaction. Some signs of food allergy are severe and require immediate attention. If you think a certain food is causing an allergic reaction, stop the food and get medical advice. If so, your baby might have a food allergy, too. You can increase the benefits of breastfeeding if you avoid eating allergenic foods including milk, eggs, fish, and nuts. The Food and Drug Administration has recently approved the prescription antihistamine Zyrtec for the treatment of year-round allergies in infants as young as 6 months old. Skin moisturizers or 1 percent hydrocortisone cream for eczema and other allergic rashes. Colds are more common in the winter, but indoor allergies (such as a dust mite allergy) may be present all year. Children with environmental allergies may have stomach ailments as a result of swallowed phlegm, which can irritate the stomach. But these symptoms can also result from allergies - and not just to food. In toddlers and older children, it appears as persistent dry, itchy patches of skin, usually on the neck, wrists, and ankles, and in the creases of the elbows and knees. Babies with allergies may rub their eyes frequently (allergic eyes tend to be itchy), tear excessively, have dark circles under the eyes, and be irritable. If you think your child is showing any of these symptoms, call your doctor right away. Sometimes coughing and wheezing are the result of asthma, a lower respiratory disease that affects about 15 percent of children in the United States. Lower respiratory tract: Coughing and wheezing (noisy breathing in which your baby makes a whistling sound) are common in infants and toddlers. Hill DJ, Roy N, Heine RG, Hosking CS, Francis DE, Brown J, Speirs B, Sadowsky J, Carlin JB. Effect of a low-allergen maternal diet on colic among breastfed infants: a randomized, controlled trial. Food allergies are less common, but they can be more serious. If your child is in pain or has any of these symptoms, call the doctor. At that time, solid foods can be introduced in a slightly different order than for babies without MSPI. Babies with MSPI also do better if solid foods are not introduced until around 6 months of age. It is very rare for lactose to cause a problem in infants, although older children (over the age of 5) and adults may develop this problem later in life. Children with MSPI may cry 18 hours or more a day and may develop weight loss, congestion, repeated vomiting, reflux, and certain kinds of skin rashes. Severe allergic reactions require urgent medical attention. Anaphylaxis is the most severe form of allergic reaction and can be life-threatening. Allergies are usually diagnosed once your doctor has listened to your story and examined your child. Airborne allergens can also contribute to the symptoms of asthma and eczema. The symptoms of an allergy vary according to what a person is allergic to. Once your infection-fighting system has made IgE against an allergen, coming in to contact with that allergen can result in an allergic reaction, with symptoms that can range from annoying to life-threatening. Symptoms of allergy range from mild and annoying to severe and potentially life-threatening. As soon as you find that your baby has developed an allergy to wheat within 2 to 3 hours of consumption, you need to seek the advice of your doctor. If you notice any one or more of these wheat allergy symptoms in babies, it is essential to seek the advice of your pediatrician immediately. If your baby has severe allergy towards wheat, she would develop this symptom almost immediately. Here are some of the most common signs of wheat allergy in baby: Keep an eye over your baby after feeding her foods made from wheat. 4 Symptoms Of Wheat Allergy In Babies : If you are feeding your baby wheat for the first time and it causes your baby to vomit, develop skin rashes or have other stomach related issues, it indicates that your baby is allergic to wheat. "What to do if a baby has an allergic reaction." Medical News Today. Breastfeeding a baby with food allergies. Babies who develop allergic reactions that include wheezing, swelling of the lips or tongue, or trouble breathing will require immediate medical attention. People can often treat allergic reactions in babies at home. It is not possible to prevent all allergic reactions in babies, but there are steps that parents and caregivers can take to reduce the risk. This way, if an allergy does develop, it is easier to determine which food is responsible for the reaction. This is because they can develop allergies to the foods that the person who is breast-feeding them eats. A baby can develop hives as the result of a food allergy. When the body is allergic to a substance, it releases a chemical called histamine that can lead to the development of hives and other allergy symptoms. Although it usually affects children aged 2-6 years, papular urticaria can also occur in infants. Common triggers of eczema outbreaks in babies include irritating fabrics, soaps, and heat. Some allergic reactions can also lead to additional symptoms, such as nausea and vomiting.
There is little information in the literature on minimal disease-eliciting doses of gluten for sensitive individuals purchase januvia 100mg online. Thompson (2004) concluded that none of these three brands could be considered a reliable source of oats free of potentially harmful gluten proteins order generic januvia on line. There is no consensus as to whether oats present a hazard for all individuals with celiac disease purchase 100mg januvia visa. Koehler and FDA (2005) estimated the average amount of total grain and individual types of grain available for consumption per person in the U cheap januvia 100 mg on line.S., and the total exposure to gluten-forming proteins that would result from this grain consumption. Rye, barley, triticale, and oats are used to make substantially fewer food products. In contrast, the prolamins in other cereal grains (e.g., zein in corn and orzenin in rice) have been shown not to affect individuals with celiac disease (EFSA, 2004; Kasarda, 2004b). There is also evidence that some individuals with celiac disease may react adversely to oats (Lundin et al., 2003; Arentz-Hansen, 2004). The term "gluten" will be used in this report in the more general sense of the combination of both prolamin and glutelin proteins found in cereal grains. Only recently has the medical community become more aware of the need to screen for celiac disease when patients experience health problems that may be associated with the disease or when patients have family members, especially first- and second-degree relatives, who have celiac disease (NIH, 2004). Mäki and Collin (1997) postulated that there are many more currently healthy individuals who are genetically predisposed to developing celiac disease in future years than there are individuals who are now affected by celiac disease. Due to the existence of silent or latent cases, it is assumed that the incidence of celiac disease is underreported (Mäki and Collin, 1997). This disease is often misdiagnosed as another gastrointestinal malabsorptive disorder (e.g., irritable bowel syndrome) due to similarities in their symptoms (Sanders et al., 2001). The National Institutes of Health Consensus Development Conference Statement on Celiac Disease currently estimates that 3 million Americans, a little less than 1 percent of the population, may have celiac disease (NIH, 2004). Until recently, celiac disease was considered to be a rare disorder in the U.S., with an estimated prevalence rate of 1:5,000 (Talley, 1994). Mäki and Collin (1997) also suggested that there is an even larger population with "latent" celiac disease, individuals who are positive for serological markers or genetic susceptibility to disease and are entirely asymptomatic. Currently, individuals with clinical manifestations, or "symptomatic" celiac disease, are believed to represent a small portion of the total affected population (Mäki and Collin, 1997). These cancers contribute to nearly two thirds of deaths due to celiac disease and are a major reason for the nearly two-fold increase in overall mortality of adult patients with celiac disease compared to the general population (Corrao et al., 2001). For example, individuals with celiac disease have an 80-fold greater risk of developing adenocarcinoma of the small intestine, a greater than two-fold increased risk for intestinal or extraintestinal lymphomas (Green and Jabri, 2003) and a 20-fold greater risk of developing enteropathy-associated T cell lymphoma (EATL) (Catassi et al., 2005a). Individuals with untreated celiac disease are also at increased risk for potentially serious medical conditions, such as other autoimmune diseases (e.g., Type I diabetes melliThis) and intestinal cancers associated with high mortality (Farrell and Kelly, 2002; Peters et al., 2003; Catassi et al., 2002). Extra-intestinal manifestations such as dermatitis herpetiformis, hepatitis, peripheral neuropathy, ataxia, and epilepsy have also been associated with celiac disease (Fasano and Catassi, 2001). The reasons for this diversity are unknown but may depend on the age and immunological staThis of the individual, the amount, duration, or timing of exposure to gluten, and the specific area and extent of the gastrointestinal tract involved by disease (Dewar et al., 2004). The clinical manifestations of celiac disease are highly variable in character and severity. Elimination of intestinal gluten results in modification of T lymphocyte and antibody responses and, in most cases, full mucosal recovery (Kaukinen et al., 1999; Fasano and Catassi, 2001). The activated T-cells are responsible for the mucosal damage seen in celiac disease (Fasano and Catrassi, 2001). In these individuals, binding of the enzyme tissue transglutaminase (tTG) to wheat gluten (a glutamine rich protein) potentiates uptake and presentation by antigen-presenting cells in the lamina propria, triggering a vigorous T-cell response (Schuppan and Hahn, 2002), leading to production of IgG and IgA antibodies directed to wheat gluten peptides (i.e., gliadins and glutenins) and to tissue transglutaminase (tTG). Celiac disease is characterized by injury to the mucosa of the small intestine and specifically targets the fingerlike projections, called villi, where absorption of key nutrients takes place (Figure III-1). There is no cure for celiac disease (NIH, 2004). For affected individuals, celiac disease is a lifelong condition and, if not treated, is associated with significant morbidity and increased mortality (Fasano, 2003; Corrao et al., 2001; Dewar et al., 2004). Those individuals who have a genetic predisposition to celiac disease react to peptides within the proline- and glutamine-rich protein fractions of the grains (Dewar et al., 2004). However, there is evidence that at least some persons who have celiac disease may not tolerate oats (Lundin et al., 2003; Arentz-Hansen et al., 2004). Peanut and tree nut allergies can be mild and involve symptoms such as hives, eczema and vomiting. Those with non-coeliac gluten sensitivity may have digestive problems if they eat gluten, but these problems do not cause the same type of damage to their gut as those with coeliac disease. Sometimes you might find the thing you want to avoid is in foods you might not expect. Information on gluten-free dining out and other resources can be obtained from both organisations and also from Gluten-free Ireland. Instead, gluten causes an inflammatory reaction within the lining of the small intestine which then becomes swollen and breaks down. Gliadins in wheat seem to be particularly problematic in coeliac disease. Gluten is really a mixture of plant storage proteins called prolamins. Coeliac disease is a genetically based, immune-mediated enteropathy of the small intestine which means the body produces antibodies that attack its own tissues. The main causes I see in my clinic are SIBO and gluten intolerance, which cause a leaky gut. Most importantly, find the root cause for the histamine intolerance. If testing is unavailable to you, you could simply try a diet low in histamine and add DAO supplementation at each meal. Remember that freshness is key when you have histamine intolerance! Fermented foods: sauerkraut, vinegar, soy sauce, kefir, yogurt, kombucha, etc. "Oh, how I wish my doctors had told me about the psycho-social impact of celiac disease—social isolation, anxiety, depression. Looking forward to other gluten-free cake recipes." Prior food allergy could raise the risk of developing EoE to the same food, researchers concluded. In two cases, patients had normal-appearing biopsies of the esophagus (indicating no EoE) at the time they had a food allergy. Recently, a team studying food allergy in EoE discovered that a small group of individuals developed EoE to a food after outgrowing an allergy to that same food. Most research suggests that EoE is distinct from traditional food allergy. The risk of food allergy jumped to a whopping 50 percent when eczema developed early in life or was more severe (i.e., required prescription treatment). Twenty percent of toddlers with eczema had a food allergy compared to just 4 percent without eczema, according to a large Australian study presented in March at the annual meeting of the American Academy of Allergy, Asthma & Immunology. In the study, 12 year olds completed a questionnaire on celiac-related symptoms (e.g., tiredness, stomach- ache, loose stools) and then underwent screening for celiac. Drinking milk in early pregnancy was associated with reduced asthma in mid-childhood and eating wheat in the second trimester was associated with reduced eczema. A study published in February in Alimentary Pharmacology and Therapeutics provides reassuring news that refractory celiac disease is very rare. Kids with food allergies for two years. In fact, among study participants, all of whom had celiac, there was a trend toward improved small bowel health after quinoa consumption (about ¼ cup daily for six weeks). Diners who had reactions used fewer preventative strategies. Diagnosis of celiac disease can only be made by a board-certified gastroenterologist. Celiac Disease is a digestive condition that is potentially serious if not diagnosed or treated.
H3(L1) Patients and partners generic januvia 100 mg on line, family or carers must be helped to understand the patient’s condition and its Immediate impact order 100mg januvia amex, what signs and symptoms should be considered ‘normal’ for them order genuine januvia, in order to be able to actively participate in decision-making at every stage in their care cheap januvia 100 mg mastercard, including involvement with the palliative care team if appropriate. The psychological, social, cultural and spiritual factors impacting on the patient’s and partner/family/carers’ understanding must be considered. Information should include any aspect of care that is relevant to their congenital heart condition, including a. Section H – Communication with patients Implementation Standard Adult timescale i. H4(L1) When referring patients for further investigation, surgery or cardiological intervention, patient care Immediate plans will be determined primarily by the availability of expert care for their condition. The cardiologist must ensure that patients are advised of any appropriate choices available as well as the reasons for any recommendations. H5(L1) Sufficient information must be provided to allow the patient to make informed decisions, including Immediate supporting patients, partners, family or carers in interpreting publicly available data that support choice. H7(L1) Information must be made available to patients, partners, family and carers in a wide range of Immediate formats and on more than one occasion. It must be clear, understandable, culturally sensitive, evidence-based, developmentally appropriate and take into account special needs as appropriate. H9(L1) The patient’s management plan must be reviewed at each consultation – in all services that Immediate comprise the local Congenital Heart Network – to make sure that it continues to be relevant to their particular stage of development. H10(L1) Patients, partners, family and carers must be encouraged to provide feedback on the quality of care Immediate and their experience of the service. Patients must be informed of the action taken following a complaint or suggestion made. Section H – Communication with patients Implementation Standard Adult timescale partner/family/carers throughout their care. Support for people with learning disabilities must be provided from an appropriate specialist or agency. H16(L1) Where patients do not have English as their first language, or have other communication difficulties Immediate such as deafness or learning difficulties, they must be provided with interpreters/advocates where practical, or use of alternative arrangements such as telephone translation services and learning disability ‘passports’ which define their communication needs. H17(L1) There must be access (for patients, partners, families and carers) to support services including faith Immediate support and interpreters. H19(L1) Patients, partners, family or carers and all health professionals involved in the patient’s care must be Immediate given details of who and how to contact if they have any questions or concerns. Section H – Communication with patients Implementation Standard Adult timescale provided when appropriate. H20(L1) Partners/family/carers should be offered resuscitation training when appropriate. This must include the opportunity to meet the surgeon or interventionist who will be undertaking the procedure. H22(L1) Patients must be given an opportunity to discuss planned surgery or interventions prior to planned Immediate dates of admission. When considering treatment options, patients and carers need to understand the potential risks as well as benefits, the likely results of treatment and the possible consequences of their decisions so that they are able to give informed consent. H24(L1) Patients and carers must be given details of available local and national support groups at the Immediate earliest opportunity. H25(L1) Patients must be provided with information on how to claim travel expenses and how to access Immediate social care benefits and support. H26(L1) A Practitioner Psychologist experienced in the care of congenital cardiac patients must be available Within 6 months to support patients at any stage in their care but particularly at the stage of diagnosis, decision- making around care and lifecycle transitions, including transition to adult care. Section H – Communication with patients Implementation Standard Adult timescale H27(L1) When patients experience an adverse outcome from treatment or care the medical and nursing staff Immediate must maintain open and honest communication with the patient and their family. Identification of a lead doctor and nurse (as agreed by the patient or their family/carers) will ensure continuity and consistency of information. A clear plan of ongoing treatment, including the seeking of a second opinion, must be discussed so that their views on future care can be included in the pathway. An ongoing opportunity for the patient to discuss concerns about treatment must be offered. Section I - Transition Implementation Standard Adult timescale I1(L1) Congenital Heart Networks must demonstrate arrangements to minimise loss of patients to follow-up Within 1 year during transition and transfer. The transition to adult services will be tailored to reflect individual circumstances, taking into account any special needs. I2(L1) All services that comprise the local Congenital Heart Network must have appropriate arrangements Immediate in place to ensure a seamless pathway of care, led jointly by paediatric and adult congenital cardiologists. I3(L1) There will not be a fixed age of transition from children’s to adult services but the process of Immediate transition must be initiated no later than 12 years of age, taking into account individual circumstances and special needs. Clear care plans/transition passports must be agreed for future management in a clearly specified setting, unless the patient’s care plan indicates that they do not require long-term follow-up. I5(L1) Patients, partners, families and carers must be fully involved and supported in discussions around Immediate the clinical issues in accordance with the patient’s wishes. The views, opinions and feelings of the patient must be fully heard and considered, and the patient must be offered the opportunity to discuss matters in private, away from their parents/carers if they wish. I6(L1) All patients transferring between services will be accompanied by high quality information, including Immediate the transfer of medical records, imaging results and the care plan. Section I - Transition Implementation Standard Adult timescale I7(L1) Young people undergoing transition must be supported by age-appropriate information and lifestyle Immediate advice. Management of young people arriving in the adult service will aim to ensure that they are fully confident in managing their own condition and health care. The Cardiologist will discuss the treatment plan with the young person and discuss it with their family/carers when appropriate. I8(L1) The particular needs of young people with learning disabilities and their parents/carers must be Immediate considered, and reflected in an individual tailored transition plan. I9(L1) Young people must have the opportunity to be seen by a Practitioner Psychologist on their own. Immediate Psychological support must also be offered to partners/family or carers. J2(L1) All female patients of childbearing age must have access to a service that provides specialist Immediate advice on contraception and childbearing potential and counselling by practitioners with expertise in congenital heart disease. Written advice about sexual and reproductive health and safe forms of contraception specific to their condition must be provided. They must have ready access to appropriate contraception, emergency contraception and termination of pregnancy. The principle of planned future pregnancy, as opposed to unplanned and untimely pregnancy, should be supported. J3(L1) Specialist genetic counselling must be available for those with heritable conditions that have a Immediate clear genetic basis. J5(L1) Patients must be offered access to a Practitioner Psychologist, as appropriate, throughout family Within 1 year planning and pregnancy and when there are difficulties with decision-making, coping or the patient and their partner are concerned about attachment. J7(L1) Patients actively considering pregnancy, for whom pregnancy may carry a moderate or high Immediate (class 2-4) risk, must receive joint pre-pregnancy counselling with the cardiologist and a maternal medicine specialist (consultant obstetrician) with expertise in pregnancy in women with congenital heart disease. The individualised care plan must cover the antenatal, intrapartum and postnatal periods. It must include clear instructions for shared care with secondary services, when appropriate, including escalation and transfer protocols and clear guidelines for planned and emergency delivery. Decisions on place of birth must be made in conjunction with the mother, and sufficient information must be provided to understand any choices. The consequences of such choices must be clear, particularly the impact place of birth may have in relation to the separation of mother and baby immediately postnatally. J11(L1) Arrangements need to be made for postnatal follow-up of women and contraceptive advice. Immediate Arrangements also need to be made for women to be referred back to their regular long-term follow-up programme once the pregnancy is over. Consultant Obstetricians must be able to provide emergency bedside care (call to bedside within 30 minutes) 24/7. The multidisciplinary team must include consultant obstetricians, midwives, consultant obstetric and cardiac anaesthetists and haematologists with expertise in the care of pregnant women with congenital heart disease. Regular specialist multidisciplinary team case conferences must take place across the network with additional input including: high-risk obstetrics, cardiac and obstetric anaesthesia, haematology, neonatal and fetal medicine, contraception and pre-pregnancy care. Section L – Palliative care and bereavement Implementation Standard Adult timescale Palliative Care Note: Palliative care is the active, total care of the patients whose disease is not responsive to curative or life-extending treatment. This must also include bereavement follow-up and referral on for ongoing emotional support of the partner/family or carers.