Relevant considerations for setting a review period

Viktor is 63 years old. He has stage 3 COPD diagnosed 10 years ago and experienced a stroke 8 months ago. He had a prolonged hospital stay after his stroke and has only been discharged home within the last 2 months.

Due to his COPD, he experiences breathlessness when moving around his home which is worsened by the increased effort due to reduced coordination and balance. Viktor requires daily medication for COPD and stroke prevention as well as physiotherapy, occupational therapy and input from Speech and Language services for stroke rehabilitation.

Viktor has a shower chair that was supplied by an Occupational Therapist due to breathlessness before his stroke. However, his son now has to help with washing due to the right-side weakness following his stroke. His wife finds this too difficult to manage, and the aid does not allow Viktor to manage this task independently anymore.

Viktor is unable to dress as he cannot manage buttons or zips and wears loose clothing which his wife has to help him get into as he cannot lift his right arm.

His wife will make all the meals for Viktor and has to cut these up to make it easier to chew or swallow, as he can still have issues with eating and is at risk of choking.

He has issues with incontinence; however, this is due to the reduced pace and being unable to make the toilet on time.

In a letter that Viktor submits as additional supporting information, Viktor’s son provides a few additional details on how Viktor needs help from them, and which adjustments have been made in the recent past to accommodate Viktor’s needs:

Viktor has made very little improvement since his stroke despite ongoing rehabilitation. He has poor memory and is not safe within the kitchen environment due to this and his right-sided weakness.

Viktor now sleeps in a recliner chair which is better for his breathing, as he gets increasingly breathless when lying flat. Viktor regularly tries to walk to the toilet during the night, which has resulted in multiple falls. The occupational therapist arranged for Viktor to receive urinary bottles to keep beside his bed to avoid his having to get up at night.

Viktor has made little improvement since his stroke in terms of his mobility or his speech. He continues to use a walking frame that he was given in hospital but has had several falls despite this. Viktor has been house-bound since his discharge from hospital and has been unable to access the upper level of his home due to his poor mobility. Has been sleeping in the living room due to his poor mobility and breathlessness.

Supporting information from Viktor’s stroke rehabilitation team is available. It details the limited improvements that have been made since Viktor’s stroke and the view that Viktor’s prognosis is unlikely to significantly improve.

The case manager reviews Viktor’s application. They use their knowledge of his conditions as well as guidance on aids and appliances in the Definitions DMG chapter, as they do not consider those noted in Viktor’s application to be reasonable or practicable for him to use following his stroke. They determine that Viktor is entitled to the enhanced rate of the daily living and the mobility component.

The case manager also considers the potential impact of other relevant factors outlined in this chapter on his level of need to establish whether setting a review period would be appropriate.

From the information Viktor has provided, as well as the supporting information, they gather that Viktor faces a challenging prognosis with a stroke and a worsening history of COPD.

The case manager determines that, given the supporting clinical information and letter of support from Viktor’s son, it is more likely than not that he will not fully recover from the stroke. Furthermore, given that COPD is a degenerative disease, Viktor’s breathlessness and treatment needs are likely to increase over time.

The case manager therefore decides that an indefinite award is appropriate. Viktor’s determination letter sets out the reasons why we would not be reviewing his case in future. As no review date was set, the case manager did not need to outline any updates Viktor may need to provide at his next review.

John is 58 years old. He was diagnosed with stage 2 COPD 5 years ago and had a mild stroke 3 months ago. In his application form John explains that he has ongoing left sided weakness following the stroke. He notes that this weakness results in problems with grip, coordination, and balance within the home and when mobilising. John also reports that he has had a recent infective exacerbation of his COPD due to aspiration during his stroke event and has had a prolonged course of antibiotics and steroids for this.

John explains that due to his left sided weakness he struggles to grasp utensils when washing himself or trying to prepare something to eat. His wife has to assist him in the shower at present as he worries about falling due to poor balance and does not have the full use of his left-hand side. He also reports that he finds cutting his food up difficult due to poor grip in his left hand and that his wife has to aid with this. John notes that his speech was affected by the stroke and that whilst this continues to improve, he still struggles to make himself understood to those outside of his family or during his various medical appointments. His wife normally accompanies him to appointments to help him make himself understood.

John reports severe fatigue since the stroke. He notes that he can become very forgetful and that he often needs reminding to take his medications at the right time.

John adds that due to his left sided weakness, he struggles to mobilise or to rise to standing unaided. He notes that he has poor balance and coordination and that he has been prone to trips and falls as his left foot drags. He feels that his fatigue also compounds this and that his balance is worse over the course of the day.

Due to his COPD, John has had increased breathlessness since the stroke. He had prolonged antibiotic prescriptions following the stroke for a chest infection and still feels very out of breath, wheezy and at times dizzy. He notes that since being discharged from hospital he has been largely house-bound due to his reduced mobility save for attending appointments. John adds that he finds he can still struggle to mobilise from one end of the house and back again without increased breathlessness, fatigue, and increasingly poor balance. John continues to use a walking frame that he was provided with by physiotherapists during his hospital admission.

John is prescribed inhalers and continues to take steroids for his recent chest infections. He is prescribed stroke prevention medication. He has ongoing input from physiotherapy, occupational therapy and Speech and Language services. John provides supporting information from his clinical team to support his application.

The case manager reviews John’s application. Based on John’s needs, they determine that he is entitled to the enhanced rate of ADP for both daily living and mobility components.

The case manager moves on to determine whether, and when, a scheduled review would be appropriate. From the information that John has provided, as well as the supporting documentation, they understand that John will continue to receive treatment and that he has been making improvements in his rehabilitation since his stroke. They consult the medical guidance to read up on the symptoms of John’s conditions, as well as the treatment and prognosis. They request a case discussion with a Health and Social Care practitioner to better understand both

• The interplay of John’s conditions
• How his continued treatment is expected to impact his level of needs.

The case manager decides that a review of 3 years is appropriate, as John is likely to have experienced a reduction in his level of needs by the end of that period, as he continues to recover from his stroke. The case manager anticipates that John’s entitlement might reduce to a standard level of ADP for both daily living and mobility due to an improvement in physical capabilities and for his COPD.

The determination letter set out the reasons why  a review had been scheduled for 3 years,  as this would allow time for John to recover from his stroke.  The case manager explained that we would likely need an update from him at his next review on how his ongoing treatment has affected his stroke-related needs.

Blair is 51 and has been struggling with Osteoarthritis for the past 10 years. Additionally, he has been diagnosed with stage 3 Chronic Obstructive Pulmonary Disease (COPD) which has been worsening progressively over time. These comorbidities significantly impact his daily living and mobility needs as well as his overall quality of life. After struggling to fulfil his job role in a warehouse, Blair took voluntary redundancy last year and has now applied for ADP.

In his application form, Blair mentions that he is prescribed high dose pain medications, including Lidocaine patches, Co-Codamol 30/500mg (4x daily) and Tramadol 100mg (2x daily). Despite this he continues to experience chronic pain and limitations to his ability to move around making it challenging to manage daily life and activities. Blair experiences pain, breathlessness, and fatigue, which cause difficulty with washing. When he has a bath, he requires assistance to get in and out of the tub. He has a raised toilet seat at home, and handrails in the bathroom to help with toileting, however it still takes Blair a lot of time to use the toilet, and he needs to take around 20 minutes to recover from breathlessness each time.

Additionally, Blair is currently prescribed triple inhaler therapy (3 different inhalers) to help alleviate his breathlessness. Despite this Blair often experiences frequent exacerbations of COPD leading to hospitalisation (last admission 6 weeks ago for 5 days).

His osteoarthritis mainly affects upper (hands and shoulders) and lower joints (hips and knees). Blair therefore finds bending, for example to wash his lower half and when getting dressed, to be difficult. He requires assistance, also due to his breathlessness when attempting to perform these tasks independently. Blair reports that he can struggle to obtain his mediations from packaging due to arthritic pain and stiffness in his fingers and his family have to dispense his tablets for him. 

Blair gets breathless walking around the home and holds on to furniture when mobilising indoors. Due to the pain, he will shuffle when walking around the home and has had instances of trips and falls. When outside of the home, Blair uses a walking stick and will also hold on to family for support when mobilising short distances.

Blair has provided a copy of his medicine prescriptions and his most recent hospital discharge summary as supporting information.

The case manager establishes that they have enough information to make a determination on Blair’s entitlement. They determine that Blair is entitled to the enhanced rate for both daily living and the mobility component of ADP.

From reading medical guidance to find out more about COPD and osteoarthritis, as well as from prior training run by practitioners, the case manager understands that the combination of osteoarthritis and stage 3 COPD is highly likely to significantly impact Blair’s daily living and mobility in a sustained way.

However, the case manager establishes that an indefinite award may not be appropriate given that adjustments and other medical treatments may still be available to Blair in the future. Blair could be offered further inhaler medicines and could be eligible for joint replacement surgery for his arthritis which may positively impact his level of daily living and mobility needs. The case manager determines that a 10-year review period is applicable.

The determination letter issued to Blair sets out the review period decision. It shares that as his symptoms were not expected to change in the near future, his award would be reviewed in 10 years. The case manager explained that as there is a possibility of other medical treatments in future , at his next review, an update would be needed from Blair on whether any further treatments had taken place and whether this has impacted his level of need.

Esther is 56 years old and was first diagnosed with schizophrenia at age 26. They live on their own in a rented flat and have current input from mental health services, who have been providing input for thirty years and takes significant levels of mental health medication.

Esther is supported by twice weekly support sessions from a mental health support worker and daily home care visits. Schizophrenia is a lifelong condition with low probability of full remission, with symptoms remaining stable and enduring.

Esther reports that they have learned to live with their condition and their main restrictions are self-care and when they come into contact with other people. Care staff report that Esther:

• needs supervision or assistance to either prepare or cook a simple meal;
• will not wash unless prompted;
• will not change their clothing unless prompted;
• is unable to engage with people at all without overwhelming anxiety
• struggle to deal with financial matters due to this

The case manager awards the following points for the daily living component:

1(e): 4 points

4(c): 2 points

6(c): 2 points

9(d): 8 points

10(b): 2 points

Care staff report that Esther can go out on the majority of days, however they require to be accompanied due to the symptoms of their condition. The case manager awards the following points for the mobility component:

1(f): 12 points

The case manager checks the decision-making guidance on review periods and notes that Esther’s condition is on the list with conditions that suggest a review may be inappropriate (Pathway 2). The case manager seeks input from a practitioner on Esther’s condition and whether setting a review date would be appropriate. Based on the practitioner’s advice, the case manager identifies that Esther has a lifelong condition, which they have had for over thirty years. Although there are likely to be small changes in need, it is highly unlikely due to the length and nature of condition that their condition will change. The case manager decides it would be reasonable to award an indefinite award based on the likely longevity and complexity of their condition. They make the determination and submit the case for internal quality assurance.

Esther’s determination letter advised her that we would not be setting a review date on her award as the case manager had decided that she was entitled to an indefinite award. As no review date was set, the case manager was not required to outline any updates needed from Esther for their next review.

Melissa is 52 years old. She has a diagnosis of bilateral cataracts for which she is awaiting surgery. Melissa was recently admitted to hospital following an infected ulcer in her right leg that was not healing. She was found to have diabetes and had to have a below knee amputation due to the infection.

In her application form, Melissa explains that managing her blood sugar levels and administering insulin has become a crucial part of her daily routine, especially since she struggles to see well enough. She relies on her daughter for support, including checking blood sugars and administering insulin. She has been unable to learn how to use glucose monitors and understand the variability in her sugar levels, due to her reducing eyesight all while dealing with physical weakness, fatigue, and vulnerability following her recent hospital discharge. This leads to her daughter regularly monitoring Melissa to ensure her treatment can be delivered effectively.

Melissa has struggled to adapt to a regulated diet since her diagnosis and treatment started. Her daughter has to ensure Melissa eats a proper diet, at least 4 times per day.

Her ongoing struggles and regular hypoglycaemic events cause dizziness and blackouts. She has had numerous falls due to instability and poor balance as she adapts to her recent below the knee amputation. A combination of ongoing unstable blood sugars and her physical amputation causes Melissa to need support with washing and bathing, as she is at risk of falling when carrying out this task. She used to attend numerous social clubs with friends, however, is currently unable to due to the ongoing support she is requiring within the home. Melissa requires consistent monitoring and intervention. She remains under the supervision of her diabetic consultant every 3 months and is reviewed by the diabetic nurse monthly due to her instability.

The case manager establishes that Melissa has satisfied the backwards test, as her needs related to her diabetes have now been ongoing for more than 26 weeks. They determine that Melissa is entitled to both the daily living and mobility component of ADP at the enhanced rate.

Due to the new diagnosis and variability of the condition, the case manager sets a 2 and a half year review period as Melissa may have learned to adapt to her condition by then, potentially leading to her only being entitled to a reduced award.

Six months after her initial determination, Melissa reports a change of circumstance, triggering an unscheduled review. She informs Social Security Scotland that she will be undergoing surgery on her eyes to treat her cataracts. The first operation is scheduled for in two weeks. She also reports that she has recently attended orthotics services and had a leg prosthesis fitted but is still adjusting to using this.

The case manager consults medical guidance and learns that the second cataract operation will most likely be scheduled three months after the first. Melissa can be expected to recover from the second surgery after three months. Given that her difficulties with managing her diabetes is strongly linked to her eyesight, the case manager establishes that it is more likely than not that she will learn to adapt to her diabetes within these three months, given that her eyesight will have improved significantly. Given that Melissa will have had more time to adjust to her condition by then, her need for assistance regarding her diet might have decreased or ceased by then as well.

The case manager establishes that a period of adjustment to a new prothesis would be reasonable but that this would likely be achieved in the same time period in which Melissa is receiving her cataracts surgeries.

The case manager establishes that it is more likely than not that Melissa’s needs will not change in a way that would impact her entitlement between now and her having fully recovered from the second cataract operation.

The case manager therefore makes a determination that Melissa remains entitled to the enhanced rate of both components of ADP. The case manager sets the review date for Melissa’s award for three months after her second surgery.

Melissa’s determination letter states that her review has been scheduled for three months after her second cataract surgery. This timeframe is intended to allow sufficient time for her to recover from the procedure and adjust to using her leg prosthesis. She was advised that the review would focus on obtaining an update on the outcome of her second cataract surgery and her ability to manage daily living and mobility activities while using the prosthesis. They remind Melissa that she must report a further change of circumstances, should her needs significantly reduce before her review. This is to avoid Melissa incurring an overpayment.

Frank is 45 years old. He has experienced symptoms of fatigue, muscle pain, stiffness and weakness and swallowing difficulties over the last 2 years. Recently these symptoms have worsened significantly, and Frank was given a diagnosis of primary progressive multiple sclerosis (MS) 3 months ago.

In the statement of support, Frank’s family have indicated he appears weaker and fatigued and shows a lot more vulnerability to stresses in life. He is unable to perform a number of activities independently, leading to an increased reliance on family. He has had a number of falls and relies on assistance to wash and dress due to physical weakness and pain. He needs prompting to take his medications due to fatigue.  He has reported swallowing difficulties, poor appetite, and weight loss. Frank’s mobility has been significantly impacted and he requires a walking frame to mobilise but is rarely able to leave the house due to pain and weakness.

Frank is receiving input from specialist services, but his condition appears to be progressing and his physical capabilities have decreased markedly in the last two years. The local authority is currently making adaptations to Frank’s home due to his increased needs.

The case manager establishes that although Frank only received a formal diagnosis 2 months ago, he has satisfied the backwards test as his needs relating to this condition have been ongoing for 2 years.

They determine that Frank’s diagnosis of primary progressive multiple sclerosis presents complex challenges that are unlikely to improve despite his young age. They determine that Frank is entitled to the enhanced rate of ADP for both the daily living and mobility components. Even though Frank has had his condition for a short time and is still adjusting to the changes, they decide to give an indefinite award. Not setting a review period is appropriate as multiple sclerosis is a long-term progressive condition and Frank is highly unlikely to experience a reduction in needs.

Franks’s determination letter advised him of the reasons that we would not be setting a scheduled review for his award in future as we had decided that he was entitled to an indefinite award. As no review date was set, the case manager was not required to outline any updates needed from Frank at his next review.